INSPIRE - Issue 27, 2023

Exploring Innovation in Health Welcome to INSPIRE, 2023

If one takes the view that we should create and derive value through innovation, then healthcare is truly leading the way. According to the World Health Organisation, the 21st century is seeing technological advances revolutionising the healthcare sector at an unprecedented rate, and at an unparalleled scale. Advances in the digital sphere, artificial intelligence and gene editing are transforming the ways that diseases are detected and treated. There has always been innovation in healthcare, from the development of the first smallpox vaccine in the 18th century, to the introduction of antibiotics in the 1920s and then the world’s first organ transplant in 1954. Today, if you or someone you know needs to be diagnosed, treated or even require surgery for an illness or disease, then it is increasingly likely that advances in medical technology will improve the chances of a faster diagnosis, less invasive or an improved treatment regime and therefore a more successful outcome.

Terms such as artificial intelligence (AI), virtual reality, gene editing and 3D printing, which were previously used in science fiction, are now science fact! In this INSPIRE we explore real world examples of these innovations, and how these are incorporated into the Australian healthcare environment.

Read how AI is being used to train disability support workers and used to create avatars that can be used to improve outcomes for skin cancer patients.

Medical devices have also benefited from technological advances. Learn how Oli™, a revolutionary non-invasive device, can observe real time foetal activity to predict early warning signs of complications of pregnancy and labour, or how the Sleep Ninja® app can help teens improve their sleep and reduce anxiety.

There are also other articles that explore different genetic innovations, and how those innovations can track down rogue cells and help predict the likelihood of disease. Professor Kathryn North, AC, shares her perspective on how Australian genomics is driving innovation.

We hope that you enjoy this, the first edition of INSPIRE for 2023! It is, as always, packed with articles from the entire Australian healthcare and health and medical research ecosystem. And the community that we support have been generous with sharing their stories and innovations – our sincerest thanks.

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18

Can electronic medication systems reduce dangerous medication errors for children?

28

Innovating for Children’s Health MURDOCH CHILDREN’S

Tracking Down the Rogue Immune Cells that drive Rheumatoid Arthritis.

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INSPIRE is a publication of Research Australia Ltd ABN 28 095 324 379 384 Victoria Street Darlinghurst NSW 2010

Who can submit articles?

Helping babies to thrive

Any current member of Research Australia who would like to share a relevant story that affects their organisation including, philanthropic donations and their outcomes, research findings, and any other related health and medical research topic that affects the Australian population.

Submission guidelines & deadlines

For information regarding how to submit and publishing deadlines visit the Research Australia website

Disclaimer

The opinions expressed in INSPIRE do not necessarily represent the views of Research Australia. Whilst every effort has been made to ensure accuracy, no responsibility can be accepted by Research Australia for omissions, typographical or inaccuracies that may have taken place after publication. All rights reserved.

Revolutionising disease prediction

20 Common cancer risk and the immune system

32 GENETIC TECHNOLOGIES

The editorial material published in INSPIRE is copyright. No part of the editorial contents may be reproduced or copied in any form without the prior permission from Research Australia. © Research Australia 2020.

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EVENTS OVERVIEW

HEALTH ECONOMICS ROUNDTABLE

Research Australia’s first Health Economics Roundtable for the year focused on the impact of Australian health innovation and the Health Technology Assessment (HTA) Review currently underway by the Australian Government.

The Roundtable was attended by nearly a hundred representatives from the health and medical research sector. Guests spanned the entire pipeline across academia, medical research institutes, industry, health systems and government.

Guests heard from leaders across the health and medical research pipeline. Professor Frank Lichtenberg from Columbia University in the United States presented his study on the impact of pharmaceutical innovation in Australia. Medicines Australia CEO, Elizabeth de Somer, also discussed the HTA Review underway by Government and its implications for the health and medical research sector. Speakers also took a deep dive on the impact of health services research to Australia’s health system and economy. Professor Christine Paul from the University of Newcastle and the Sax Institute shared case studies that illustrated how health services research contributed to the Australian health system. Representatives from both the Australian Health Economics Society and the Health Services Research Association of Australia and New Zealand, discussed the key issues for the health economics community and Research Australia cemented the shared advocacy platform that the Roundtable will look to drive across the next year.

Professor Frank Lichtenberg, Columbia University, USA

UNIVERSITY ROUNDTABLE

The Research Australia University Roundtable provides a forum for Research Australia’s university members to discuss issues relating to health and medical research which are particular to universities. Membership of the Roundtable consists of individuals nominated by their university. The Roundtable meets three to four times each year.

The Roundtable on 22 March was the first Roundtable to have in person participants as well as online participants. It commenced with a tour of the UTS Data Arena for in person attendees followed by a networking lunch. The Roundtable explored the theme of universities engaging with Government, starting with brief presentations over lunch by Professor Rosalie Viney, Director of the Centre for Health Economics Research and Evaluation, UTS and Professor Meera Agar, Director of Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT) at UTS.

The main part of the Roundtable was addressed by Emeritus Professor Ian Chubb AC, who as a former Chief Scientist, Vice-Chancellor of the Australian National University and DVCR at other universities, provided his perspective on what it takes for universities to engage effectively with governments. He was followed by Dr Tony Penna. Dr Penna has had a long career as a clinician, a researcher, a health administrator, and since 2012 as the Executive Director of the NSW Office of Health and Medical Research. The third presenter was Alison Butt, Director of the Research Strategy Office at UNSW Sydney, a regular representative at the University Roundtable and a former Research Australia director. Alison used the MRFF as a case study in policy development, tracing its origins in reviews and reports more than a decade ago through the process for developing Strategies and Priorities, and how this has influenced the disbursement of funding.

The next University Roundtable will be held on 31 May at Australian Catholic University in Melbourne. The program is currently being developed.

NSW Government, Nadia Levin, Research Australia CEO, Professor Russell Gruen, Chair of the Roundtable and Dean, ANU College of Health and Medicine

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ENHANCING THE LIVED EXPERIENCE CAPABILITY OF A DIGITALLY ENABLED DISABILITY SUPPORT WORKFORCE

There is a strong demand for person-centred care across the lifecourse. Indeed, a critical difference between the health care and social assistance industry and other industries is the need for human connection and interaction. This is true not only in the physical sense but in the psychosocial sense. Both clients and providers want a trained and skilled care workforce with lived experience. Yet one of the key challenges providers often face in recruiting staff is their diverse level of motivation, experience, and skills to deliver care.

Some staff have a high level of passion and drive, some have first-hand experience, either lived or as carers, while others have very little experience or knowledge about the sector. The latter group may contribute to the high turnover of care workforce. Formal education and training can bridge these diverse skillset gaps to meet certain professionals’ competency levels. Workplace integrated learning increases the ‘real world’ understanding of the care work requirement. One third of the care workforce have VET qualifications, and despite having the shortest amount of time to complete their formal education and training, it is this group which provides the bulk of personal care, for example as personal care assistants or disability support workers.

EMPATHY TRAINING USING IMMERSIVE EXPERIENCE

Disability support workers need a range of personal attributes such as patience and compassion in addition to skills in personal care, administration, information technology, teamwork, and problem solving. Empathy is a vital skill for disability support workers because the presence of empathy can improve the quality of communication and relationships with clients, as well as the responsiveness of workers to the needs of clients. While empathy drives good quality care for clients, this is not something that can be taught in a classroom or via reading a textbook. It requires lived experience that a new employee in the care sector may not have. Virtual Reality allows for immersion in a life-like simulated environment, and through interaction with this rich sensory environment, communication and understanding of others’ perspectives can be strengthened. Although the

The ABS has estimated that almost one in five Australians live with a disability, while Jobs and Skills Australia has estimated there are over 2 million people, mostly women, employed in the health care and social assistance industry.

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cultivation of empathy can be achieved through several existing interventions, virtual reality offers another viable way to develop this attribute.

SUCCESSFUL PARTNERSHIPS BETWEEN RESEARCHERS, END-USERS, AND PROVIDERS

The impetus for the study arose when Mercy Connect, a regional disability provider, commissioned Valley General Hospital, a healthcare software development company, to co-design IMercyVE with lived experience staff, carers and volunteers. Mercy Connect partnered with La Trobe University to evaluate this project. The IMercyVE aims to improve staff awareness, understanding of, and insight into the experience of living with intellectual disability.

The IMercyVE emulates what living with an intellectual disability is like including the frustration, confusion, fear and discomfort clients experience, and in the process develops empathy for those clients. Users are immersed in the experience by standing in a virtual space where they see inside a typical house. Three scenarios with a series of increasingly challenging daily tasks were developed including watching TV, having a phone conversation and preparing food.

Published in the Journal of Applied Research in Intellectual Disabilities, our study showed that IMercyVE has the potential to be offered as a remotely delivered and flexible staff training tool suitable for building empathy, for use by rural workers and during pandemics. The study found that the experience of being in the virtual reality helped the participants develop understanding of how the world might be experienced by a person living with disability. ‘I felt I experienced a snippet of what being disabled [is like] and the frustrations and the stop-starts of life,’ one participant said. ‘It gives a much, much deeper understanding,’ said another. Even for participants with prior lived experience, they found the IMercyVE program helped them to recognise the experience of living with disability in a different way than they had previously encountered.

HOW INNOVATION CAN BE ADAPTED, TRANSLATED AND LEAD TO COMMERCIALISATION PATHWAYS

Our study is among the first to show the potential of VR as a training tool for the disability support workforce. Staff can gain service users’ perspectives on what it is like to be living the service users’ life without having to go on site. It dispels myths and assumptions and enhances the responsiveness of staff to the needs of service users. IMercyVE has also been adapted to train informal carers who are parents, which has demonstrated increased parents’ knowledge and lived experience about their children with intellectual disabilities. The IMercyVE program is used for recently recruited staff to the community disability service as part of their onboarding and orientation activity at Mercy Connect and is also available to download online.

Author: Professor Irene Blackberry, Director of Care Economy Research Institute, La Trobe University

Professor Irene Blackberry

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WALK-THROUGH SCANNERS AND 3D AVATARS: THE FUTURE OF SKIN CANCER DIAGNOSIS

Ateam from Monash University is leading the way in harnessing new technologies – including artificial intelligence (AI) and cutting-edge full body scanning – to improve outcomes for skin cancer patients.

Australia has the dubious distinction of having the highest incidence of skin cancer globally. Over 1,700 Australians die of the condition each year, and treatment costs exceed AUD $1 billion annually, yet no standardised diagnosis pathway exists.

Monash School of Public Health and Preventive Medicine researcher and Dermatologist Associate Professor (A/ Prof) Victoria Mar is looking for ways to change this.

She says, “Dermatology workforce shortages and long wait times were already an issue prior the pandemic, and now the situation is exacerbated. But cancer doesn’t wait for medical appointments,” she says. “We need to work smarter, and incorporate new technologies to optimise diagnosis.”

CREATING A NATIONAL NETWORK

In 2020, the Australian Cancer Research Foundation generously funded the establishment of the Australian Centre of Excellence in Melanoma Imaging and Diagnosis (ACEMID), a national network of cutting-edge imaging technology created to advance the detection and management of melanoma. The Centre comprises 15 Vectra 3D whole body scanners, valued at AU$10 million and located at metropolitan and regional hubs around the Eastern seaboard. A/Prof Mar leads the Victorian arm, overseeing the use of the scanners at three Melbourne sites, and regional sites in Wonthaggi and Bendigo.

Researchers from Monash University are embracing artificial intelligence and cutting-edge imaging to improve outcomes of Australia’s number one cancer scourge: skin cancer.

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3D AVATARS AID IN DETECTION AND TREATMENT

The scanners allow for objective, secure collection of skin photography in just milliseconds. They generate 3D avatars, enabling systemised and incredibly detailed documentation of visible skin surfaces. Follow-up photography at 6-12 monthly intervals allows for the detection of new or changing lesions.

The avatars can be viewed remotely by Dermatologists via telehealth, enabling high-quality consultations for rural and remote patients.

“We’re using the ACEMID platform to run a cohort study to deliver a risk-stratified, imaging-based approach to melanoma prevention, early detection and surveillance. The platform is also being used for the IMAGE trial, run via the Melanoma and Skin Cancer Trials group at Monash University, which will provide missing evidence as to the impact of Melanoma Surveillance Photography (MSP) on clinical outcomes. MSP is costly, and evidence is needed to support funding decisions that may one day see this incorporated into standard care.”

Highly specialised photography is not the only technology A/Prof Mar has her sights set on. Together with colleagues from MoleMap and Monash eResearch, she’s testing a bespoke AI-algorithm trained to review dermoscopic camera images.

USING AI TO HELP IDENTIFY AND HELP COMBAT SKIN CANCER

Convolutional Neural Networks (CNNs) are a class of artificial neural networks that are most often used to analyse visual imagery through deep learning. They’ve been shown to diagnose skin cancer with impressive accuracy in experimental settings; in an Australian first, A/ Prof Mar’s SMARTI Trial has now shown a valuable role for the technology in real-world clinical settings.

Between October 2019 and May 2021, 214 participants in Melbourne provided a total of 743 skin lesions following exclusions. A/Prof Mar’s team showed the CNN had a false negative rate of 3.7%, compared to 9.3% for tele Dermatologists, and 0.6% for treating Dermatologists.

HELPING IMPROVE ASSESSMENTS BY JUNIOR DOCTORS

The study also revealed a positive impact on assessments made by junior doctors, whose decisions were more commonly influenced by the CNN interpretation, bringing them more in line with those made by senior treating Dermatologists.

A/Prof Mar says, “An interesting human element that surfaced from the trial is the effect of AI findings on patient preferences. We had seven instances where the AI classified a lesion as uncertain or malignant, but in each that was overruled – correctly – by the treating Dermatologists. Despite this, those patients proceeded

to invasive, and ultimately unnecessary biopsies. It’s clear that it isn’t just the medical community that will need to be brought on the AI journey in healthcare.”

DEVELOPING A FUTURE MELANOMA CLINICAL OUTCOMES REGISTRY

Aside from image-based strategies, A/Prof Mar is planning to incorporate text-based AI in a future Melanoma Clinical Outcomes Registry she’s envisioning. This will be unique among other cancer quality registries because the bulk of skin cancer diagnosis and management is performed via general practice, and relevant clinical notes and histopathology reports are sequestered in those practices, rather than at hospitals and cancer registries.

“If we can access these decentralised reports, Natural Language Processing AI could help us mine that information for relevant diagnostic and prognostic details we can learn from and improve service delivery.”

Diagnosis is just part of the equation. Understanding the likely progression of the cancer for individual patients, and their likelihood of responding to particular therapies are other ways in which AI could help us build streamlined systems that place people on the most suitable treatment plans.

“In the future you’ll walk through a scanning machine, much like in an airport, that will assess your skin via high-quality photography and AI algorithms, and almost immediately triage you into pathways of low-risk or higher risk with a lesion that requires attention. There’s a lot of work to be done until we get there, but in Australia we have a real opportunity to lead the way.”

Author: Associate Professor Victoria Mar, Monash School of Public Health and Preventive Medicine Researcher and Dermatologist

This shows a huge role for this technology around the diagnosis of skin cancers in rural and remote patients in particular, where access to specialist care is problematic,” she says.

Associate Professor Victoria Mar

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CAN ELECTRONIC MEDICATION SYSTEMS REDUCE DANGEROUS MEDICATION ERRORS FOR CHILDREN?

In partnership with Sydney Children’s Hospitals Network and eHealth NSW, Macquarie University undertook world-first research to make care safer for children in hospital.

Professor Johanna Westbrook

Electronic medication management systems (EMS) are gradually being introduced into paediatric hospitals around the world, with few published evaluations on the impact of these systems on the safety of child and adolescent patients.

Researchers from Macquarie University led by Professor Johanna Westbrook at the Australian Institute of Health Innovation, worked with two of Australia’s largest paediatric hospitals to answer the question, does the introduction of EMS reduce medication errors and harm for children in hospital?

Medication error is a global problem and in Australia the associated cost is estimated at $1.4 billion AUD annually. In response, EMS have been increasingly deployed into adult hospitals around the world with a demonstrated decrease in medication errors. While implementation into paediatric hospitals has been less widespread, Australia’s largest children’s hospital network introduced a new EMS in 2016.

BENEFITS OF ELECTRONIC MEDICATION MANAGEMENT

Research now published by Macquarie University shows that an EMS can significantly reduce the risk of an error occurring in the prescribing of medication in children’s hospitals; however, errors can increase in the early stages of use. The research was funded by an NHMRC Partnership Project, led by Professor Westbrook, with partners Sydney Children’s Hospitals Network and eHealth NSW.

Researchers measured the rate and severity of medication prescribing and administration errors in the two large paediatric hospitals where the EMS was introduced. The project not only delivered evidence on the effectiveness of the new technologies, it also demonstrated how researchers and hospitals working together could make rapid improvements to optimise systems and improve practices, to deliver safer care for children.

RESEARCH FINDINGS

During this research, 35,260 medication orders for 4,821 paediatric inpatients were reviewed. Given the complex nature of prescribing for children, multidisciplinary teams were engaged in the process including pharmacists, data analysts, biostatisticians, health services researchers, clinicians, and hospital managers. Child weight, age, dosing ranges and off-label use of medicines complicate data collection and analysis and were taken into consideration.

A particular innovation of this research was the use of a stepped-wedge cluster randomised controlled trial design where implementation of the EMS was randomised by hospital ward. The study also included an additional one-year post-EMS follow-up allowing assessment of both the short- and long-term effectiveness of the EMS to reduce prescribing errors. Over 100 interviews were conducted with clinicians to also understand and record their experience of using the new system.

DYNAMIC FEEDBACK LOOPS IMPROVE CLINICAL PRACTICES

Crucially, this project was never going to be about waiting until the end to report results. Close collaboration and dynamic feedback loops were critical from the start. Working closely with healthcare professionals within the hospital and observing many going about their regular routines, the research team were not only collecting data to evaluate the impact of the new EMS but were also able to identify practical areas where the EMS and traditional clinical practices could be immediately improved. Results and observations were fed back to the project steering committee and improvements and modifications were made in real time to systems and practices that directly impacted patient safety.

INITIAL FINDINGS PROVED UNEXPECTED

The researchers found that despite high levels of training and real-time support during implementation, prescribing errors did not change in the short term and some error rates increased during the first 70 days of use. The introductory phases of an EMS can be disruptive to many work processes. Use of the system in real-time on busy hospital wards is hard to replicate in training scenarios, meaning that many clinicians struggled with the system in the early stages. The findings highlight the need for vigilance during the first few months of EMS use.

However, benefits accrued in the long-term. A year after the EMS was introduced, there was a significant reduction in overall prescribing error rates of 36%. For high-risk drugs, there was a 33% decrease in prescribing error rates.

Regardless of whether paper or EMS was used, the most common type of error were dose errors where the child either gets too much of a medication or not enough. These types of errors occurred at more than double the rate of other error types and were also most likely to be associated with harm to children. The EMS saw a reduction in dose errors but they remained frequent. Improving the design of EMS to specifically target dose errors will be important going forward.

The journal article was published in Nature – Digital Medicine and is available here on open access

Professor Johanna Westbrook, Director, Centre for Health Systems and Safety Research, Australian Institute of Health Innovation,

Author:

Macquarie University.

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BABIES TO THRIVE HELPING

All too often, parents with development concerns about their baby are told to ‘wait and see’ and ‘give it time’ – potentially missing a critical window to seek support if they follow this advice.

But what if parents could offer their baby critical support when they first noticed their child was developing differently?

THE RESEARCH

In a study published in JAMA Pediatrics in 2021, an international research team – led by Telethon Kids Institute’s Professor Andrew Whitehouse in collaboration with the Child and Adolescent Health Service (WA) and La Trobe University – found the world’s first evidence that pre-emptive therapy in infancy could significantly reduce clinical autism diagnoses being made in early childhood.

The research found that a clinician diagnosis of autism at age three was only a third as likely in children who received the parent-led video therapy compared to those who received treatment as usual.

The four-year randomised clinical trial enrolled babies aged 9-14 months to investigate the impacts of iBASIS. All babies had shown early signs of autism, such as reduced eye contact, imitation, or social smiling.

Over a period of five months, half received the program, while a control group received normal community therapy. The study found that, at age three years, children who received the program had fewer social communication difficulties characteristic of autism; were two-thirds less likely to meet diagnostic criteria for autism; and parents reported increased sensitivity to their baby’s unique communication.

Professor Whitehouse said the findings clearly demonstrated that the earlier the support, the better the outcome.

For decades, we have adopted a ‘wait and see’ approach with autism, providing support at the point of diagnosis,” Professor Whitehouse said.

New evidence-based Inklings program represents proactive way of providing support to babies showing early developmental difficulties.

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“The problem with this approach is that autism is not typically diagnosed until three years of age, and by not applying those supports during the first couple years of life, when those first signs of developmental differences are observed and the brain is rapidly developing, we’re missing our best opportunities to support that child. The findings emphasise the importance of providing supports to children based on functional difficulties, rather than the presence or absence of a diagnosis. Rather than waiting until a diagnosis to start therapy, we need to identify developmental differences as early as possible and we need to provide developmental supports that nurture each child’s strengths.”

HOW DOES INKLINGS WORK?

Inklings is an early childhood program based on the iBASIS program for babies aged 6-18 months showing early social communication delays and therefore, at increased likelihood of autism.

The program uses video feedback as a means of helping parents to recognise their baby’s communication cues and respond in a way that builds their social communication development.

The 10-session program is delivered at fortnightly intervals by a range of allied health specialists, including speech pathologists, clinical psychologists, and child health nurses.

“Inklings focuses on supporting parents to understand the unique abilities of their babies while providing a social environment that is adaptive and responsive to their needs,” Professor Whitehouse said.

“The aim of the program is to support families of babies who are developing differently with an evidence-based therapy which will enable them to gain the skills they need to thrive.

“This program is a proactive approach in helping babies now, rather than waiting for an autism diagnosis to commence therapy.”

INKLINGS’ IMPLICATIONS

Professor Whitehouse believes the Inklings program has the potential to have a significant impact not only on developmental childhood outcomes but also on health and disability systems.

The clinical trial publications and subsequent media attention have led to requests from clinicians and health systems seeking to be trained in delivering the Inklings program globally.

In response to this demand, Telethon Kids Institute is preparing to support a state-wide roll out of Inklings in Western Australia, and there are plans in the pipeline to eventually implement Inklings nationwide and internationally.

Professor Whitehouse said given that in Australia more than a third of all participants in the National Disability Insurance Scheme had an autism diagnosis, the implications of a program like Inklings were far-reaching. Given the incidence of autism has increased steadily over the past three decades (2 per cent of Australians), and the lifelong support costs associated with autism, the findings of this research have profound implications for how we structure health and disability systems to best support the needs of autistic children and their families,” he said.

“It’s exciting to think that this program, developed in WA, has the potential to support developmentally vulnerable babies and their families worldwide.”

For further information, please visit: inklings.org.au

Author: Professor Andrew Whitehouse is the Angela Wright Bennett Professor of Autism Research at Telethon Kids Institute and The University of Western Australia and Director of CliniKids.

Professor Andrew Whitehouse

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UNLOCKING THE MYSTERIES BEHIND ADULTONSET CARDIOVASCULAR DISEASE

Epidemiological studies since the late 1980s have demonstrated higher CVDrelated mortality due to circulatory causes amongst adults who had lower birthweight.

It is known that poor ante-natal experiences sow the seeds of ailments that afflict adults. This makes the womb and the early period after birth, a promising target for prevention, raising hopes of conquering public-health diseases such as heart disease through interventions before or soon after birth.

Scientists are investigating the links between fetal growth restriction (FGR) and adult onset cardiovascular disease (CVD). In essence, researchers are keenly studying how the first nine months shape the rest of your life!

Recent data from Monash Children’s Hospital that FGR affects approximately 25% pregnancies delivered prematurely. This means that approximately 5000 babies are born under-weight every year in Australia; globally it is hundreds of thousands. CVD is silent during childhood, making low birthweight associated CVD a public health issue which flies under the radar for a long time. FGR predominantly results from a failure of the placenta to supply adequate oxygen and nutrients to the developing fetus. This leads to ‘fetal programming’, which permanently alters development and functioning of organs resulting from insults during early critical periods of development.

The heart is an important organ to be affected (thickened walls, dilated chambers, impairment in cardiac function) which is compensated for by increased coronary artery blood flow (CABF) as myocardial workload increases. The worrying part is that all this is happening even before the baby is born. This begs the question, is this compensatory increase in blood supply to the heart beneficial during early childhood or in the longer-term, to cardiovascular health during adulthood?

IMPROVED TECHNOLOGY ENABLES CORONARY ARTERY VISUALISATION

Improved ultrasound technology has facilitated visualisation of coronary arteries. Non-invasive measurements of CABF using echocardiography closely reflect invasive measurements using Doppler guidewire. Early visualization of CABF suggests augmentation of CABF to attempt compensation and maintain myocardial oxygen balance.

Based on fetal data, we hypothesised that CABF will be increased but cardiac function impaired in premature FGR infants, compared to well-grown infants. CABF was measured in the left anterior descending (LAD) coronary artery; FGR infants had a significantly higher CABF. Both the diastolic and systolic function were impaired. In essence, better blood supply was not translating into better cardiac function.

This dichotomy may be a persistent response to fetal hypoxemia (fetal programming) and/or reflection of altered

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cardiac architecture. The major issue is the possible failure of myocardial relaxation and drop in coronary vascular resistance in the face of increasing demand (e.g. obesity, hypertension or ‘strenuous’ exercise), may plausibly heighten the risk of CVD, since the required augmentation in CABF may not occur as per need, since it is already amplified having used up its ‘coronary flow reserve.’

The heart itself does not have a normal architecture due to chronic intrauterine hypoxemia induced architectural changes ( cardiac sarcomeric proteins,  glycogen and collagen deposition, and  number of binucleated cardiomyocytes).

Epidemiological studies have demonstrated higher CVD related mortality due to circulatory causes amongst adults who had lower birthweight. Alongside intrinsic cardiac changes, the coronary flow dynamics in FGR infants may putatively increase the risk of CVD in adulthood. During childhood, special attention needs to be paid to FGR-born children with ‘catch-up growth’ (in-utero undernutrition

Author: Arvind Sehgal is a Neonatologist & Clinician Scientist and the Head of Neonatal Cardiovascular Research at Monash Children’s Hospital. He is also an Adjunct Professor of Paediatrics at Monash University, Melbourne, Australia.

POTENTIAL DRUGS AND DIET RECOMMENDATIONS FOR IMPROVING CARDIOVASCULAR OUTLOOK IN FGR INFANTS

• At an individual level, and at the community level, maternal health during pregnancy has to be the main focus. This includes physicalnutritional-psychological health.

• Nationwide community awareness is key to implementing population-based strategies.

• High-risk pregnancies should be detected earlier and monitored closely.

• It is recommended that such pregnancies should be referred to perinatal centres for ongoing monitoring and delivery.

DRUGS: Amongst drugs, sildenafil, the phosphodiesterase-5 inhibitor has been used in pregnancies complicated by pre-eclampsia or FGR. However, a recent randomized controlled trial showed no differences on the main outcome of prolongation of pregnancy, only a non-significant 2.3% increase in birthweight was noted. Further refinement in dosage and time of intervention may be required. Investigators are exploring benefits of melatonin in these cohorts.

DIET: Breastfeeding and postnatal nutrition has noted to improve cardiovascular remodelling induced by FGR. In children and adolescents who were born FGR, dietary intake of omega-3 poly-unsaturated fatty acids has noted benefits to cardiovascular health. More recently, in a racially and ethnically diverse, low-income women cohort, Mediterranean-style diet was associated with lower preeclampsia odds. In addition, ‘Mindfulness-Based Stress Reduction’ compared with usual care during pregnancy, significantly reduced the percentage of newborns with birthweight <10th percentile.

Figure. Interaction of various hemodynamic forces in the hypoxemic milieu which could predispose to circulatory disorders.

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INNOVATING FOR CHILDREN’S HEALTH

The Institute has recently developed a number of sleep, mental health, vaccine and stem cell innovations, as well as digital tools to aid healthcare workers deliver accurate drug dosing and essential medical care.

CHILDREN SLEEP BETTER, WITH KIP

Murdoch Children’s is helping children get better sleep and establish healthy sleep habits for life with our Sleep with Kip™ book series. Based on over two decades of research led by Professor Harriet Hiscock, the Sleep with Kip™ stories are a fun and friendly way to learn to manage common behavioural sleep problems. “Our mission is to help every child get a great nights’ sleep with six clinically validated, evidence-based picture books,” Professor Hiscock said. “With no apps or screens, Sleep with Kip™ provides simple sleep advice for children aged three to eight years old that’s easy to fit into families’ routines.”

MENTAL HEALTH STARTS EARLY

With 14 per cent of 4–17-year old’s currently living with a diagnosable mental health condition, our researchers are also working to fix a growing mental health crisis in schools. After a successful pilot program developed by Murdoch Children’s in collaboration with The University of Melbourne and the Victorian Department of Education and Training, the Mental Health in Primary Schools (MHiPS) program was rolled out to 1,800 Victorian primary schools. Led by Professor Frank Oberklaid, MHiPS embeds mental health and well-being coordinators in schools to help students who may have otherwise slipped through the cracks.

Our program destigmatises child mental health issues, builds bridges between the education and health sector and addresses some of the barriers in seeking help before problems become more severe,” Professor Oberklaid said.

Murdoch Children’s Research Institute is always innovating to improve the lives of both healthy and sick children, their families and their communities.

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The Decode Mental Health and Wellbeing Program , developed in partnership with Education Perfect , Matterworks and Murdoch Children’s is similarly tackling mental health in schools. Led by Professor Hiscock, Decode is an evidence-based and curriculum-aligned mental health literacy program for students and a professional development course for teachers. “It’s critical to start building student’s mental health literacy from a young age so they feel armed with knowledge and tools to build resilience,” Professor Hiscock said. “Decode has been designed to do exactly that, using content creators with lived experiences who can deliver authentic messaging in language students understand.”

MENDING BROKEN HEARTS

Our researchers are also leading stem cell and clinical innovations. Developed by Dr Alejandro Hidalgo-Gonzalez and his team, stem-cell derived bioengineered Heart Valves could one day help children with heart valve disease. The technology has the potential to transform the current industry landscape by shifting away from the use of animal tissue towards a highly defined, sterile, and animal-free material. It could also improve production and supply chain issues.

Currently there is a lack of suitable implantable material for the surgical repair of valves in children with congenital diseases,” Dr Hidalgo-Gonzalez said. “Our bioengineered heart valves could solve this problem and potentially become the preferred material for the fabrication of personalised bioprosthetic valves for all genders and age groups,” Dr HidalgoGonzalez said.

RIGHT DOSE, EVERY TIME

Based on Associate Professor Amanda Gwee ’s research into vancomycin, the most common antibiotic for bloodstream infections, she has developed a web application called the Vanc Calculator which helps work out the right dosing for babies aged 0-90 days. Her findings, informed from her work at the Royal Children’s Hospital, have led to new antibiotic dosing guidelines which could soon be used in hospitals in Australia and overseas. “My findings will have a lasting impact on the health of children,” Associate Professor Gwee said. “With a simple click of a button, health professionals can

personalise the vancomycin dose to suit the baby’s age and vitals as well as the infection they are battling”.

A BETTER ROTAVIRUS VACCINE

Our researchers are also leading global innovations that aim to improve child health around the world. Professor Julie Bines has developed the RV3-BB vaccine to support newborns fight life-threatening rotavirus, a highly infectious virus of the gut that affects babies and young children. “Rotavirus continues to be a major cause of death in young children and infants around the world, particularly in the poorest countries of Africa and Asia,” Professor Bines said. “We’ve worked with emerging country vaccine manufacturers to produce a safe, effective and affordable vaccine, that has the potential to save many thousands of lives and prevent suffering in many more.

GUIDING HELPING HANDS

To help health workers care for sick children in The People’s Democratic Republic of Laos, Dr Amy Gray had developed an app in partnership with UNICEF to make essential medical guidelines easily accessible. The app is targeted at staff in health centres and outpatient departments of small hospitals who currently receive little education and material support. “The guidelines are based on the global WHO and UNICEF guidelines, adapted and translated into Lao language and approved by the Laos Ministry of Health,” Dr Gray said. “With the potential to adapt and translate content into different languages, the app could be expanded to other countries and benefit more children around the word.”

Murdoch Children’s innovation team is actively seeking partnerships with stakeholders who will help us accelerate our discoveries into real-world applications. Together we are improving the lives of children, families and future generations by amplifying our ground-breaking discoveries and world-class innovations. Contact us to partner with leaders in health innovation and make a difference to the lives of children everywhere.

Authors: Nirasha Parsotam, Head of Innovation Program, Murdoch Children’s Research Institute

Hélène Kammoun, Innovation Program Manager, Murdoch Children’s Research Institute

Sarah Teo, Innovation Program Officer, Murdoch Children’s Research Institute

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“Leading the way healthcare approaches cancer screening: who is at risk?”

REVOLUTIONISING DISEASE PREDICTION

REVOLUTIONISING PREDICTION

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Healthcare shouldn’t be one-size-fits-all. Which is why the Australia-born company, Genetic Technologies Ltd (ASX:GTG) is leading a gamechanging approach to personalise disease prediction. The company, a leader in disease risk prediction, operates a NATA-accredited (National Association of Testing Authorities) and CLIA-certified (Clinical Laboratory Improvement Amendments) genetics laboratory in Melbourne and services Australian and United States healthcare providers.

Under its geneType brand, the company has developed a revolutionary range of cutting-edge disease risk assessment tests, providing doctors insight into their patients’ risk of developing certain life-threatening diseases including breast cancer, colorectal cancer, prostate cancer, and ovarian cancer.

UNDERSTANDING THESE RISKS COULD ENABLE

Doctors know how important family history is when discussing disease risk with their patients. But it’s not the only risk factor, as many have learned — in the most difficult of ways. With 85 percent of women who develop breast cancer having little or no family history, only asking about family history in isolation could be doing a disservice to patients.

THE BREAST CANCER RISK ASSESSMENT TEST

Here’s where GTG’s risk assessment models come into play. Designed to be easily implemented by doctors who often have limited time with patients, a quick questionnaire and simple saliva sample combine to provide gamechanging insight into an individual’s risk of developing disease based on some of the most impactful risk factors they identify with.

The geneType breast cancer risk assessment is GTG’s flagship test; it stratifies the general population of women by absolute risk of developing breast cancer. Complimentary to hereditary and BRCA cancer testing, from which most women who qualify return negative results, geneType can be used on all women approaching mammography screening age. In Australia, mammography screening is recommended for women starting at age 50.

benefit of implementing geneType breast cancer risk assessment test in conjunction with current guidelines. It found implementation of the geneType test into the standard of care will lead to better health outcomes for populations around the world and save healthcare systems money when treating disease.

POTENTIAL ECONOMIC OUTCOMES

Conservative assumptions within a US ‘payor’ system were considered in the model which assumed a payor population of only 7% using geneType. The impact of applying risk stratification using geneType resulted in annual net savings per patient of $73. These cost-savings are a direct result from geneType informing a reduction in the occurrence of later stage breast cancers and interval cancers driving the overall cost-savings.

This improvement not only improves the quality of life of those women who are receiving more personalised screening recommendations and thus have their cancers detected at an earlier stage, but this translates to a $1.4 billion dollar (USD) in net savings across a payor system.

The model only looked at cost-savings over a two-year window. Additional savings would be expected to increase as the window of time increases beyond two years, particularly if the risk stratification improved the uptake of risk-reducing medication. Currently risk-reducing medication is a clinically recommended option for at-risk women and is known to reduce breast cancer diagnosis by about 50%, depending on the prophylactic medication given.

IMPACTING BREAST CANCER AWARENESS

What’s more, enabling breast cancer risk awareness amongst a patient population can improve upon many screening and risk reducing behaviors. Whether improving basic mammography compliance rates, increasing mammography frequency, supplementing mammography with magnetic resonance imaging (MRI), offering risk-reducing medication, or modifying lifestyle behaviors such as type of hormone replacement therapy or post-menopausal weight-loss, there are several recommendations that can be made based on a patients personalised risk of developing breast cancer.

The result: enables access to early detection and riskreduction. GTG recently completed an extensive health economic model in the United States to assess the cost-

EARLY DETECTION AND INTERVENTION WITH THE POTENTIAL TO SAVE LIVES.

However, women can start screening at 40, or younger if deemed at risk by their doctor. It’s here where geneType becomes a powerful tool to better inform doctors’ recommendations to start screening, or to modify screenfrequency.

All these lifesaving factors are significantly enhanced with the implementation of the geneType Breast Cancer Risk Assessment Test that can help guide application of risk reducing interventions and early detection resulting in better patient outcomes.

FURTHER DEVELOPMENTS IN RISK ASSESSMENT TESTING

A further example of GTG’s commitment to expanding the role of risk prediction in the general population was evidenced by the company’s recently announced strategy to launch a World First Comprehensive Risk Assessment Test. This test evaluates a women’s risk of developing Breast and/or Ovarian Cancer (HBOC) either from a hereditary genetic mutation or from the far more common familial or sporadic cancer. When combined with other clinical risk factors, the test provides a comprehensive

risk assessment of the likelihood of a woman developing HBOC from a simple saliva sample.

The development of these risk assessment tests underscores GTG’s deep focus on providing personalised disease prediction to the general population with the goal of enabling early detection and risk-reduction of serious disease.

Author: Dr Erika Spaeth, Director of Clinical & Scientific Affairs – Genetic Technologies

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TRACKING DOWN THE ROGUE IMMUNE CELLS THAT DRIVE RHEUMATOID ARTHRITIS.

For Sydney resident Linda, rheumatoid arthritis flare-ups strike like a storm, swelling her joints and clouding her days with pain. Like the one in 100 Australians affected by rheumatoid arthritis, Linda lives with the uncertainty of when the next flare will hit, and current treatments only partially alleviate symptoms – primarily by suppressing the immune system.

These non-specific treatments are numerous and have only variable success in preventing disease flares. Choosing which treatment to use, and when, is currently a dilemma for treating physicians.

Using new, high-resolution sequencing technologies, scientists are getting closer to deciphering the nuanced mechanisms behind rheumatoid arthritis, with the longterm goals of facilitating evidence-based treatment choices, and of predicting and even preventing flares.

A JOINT INVESTIGATION

Rheumatoid arthritis arises when immune cells that normally protect against infection turn against the body’s own tissues. The exact triggers of this cascade have long evaded scientists, and the frequency of flares and severity of disease can vary wildly between patients, consistent with a complex interplay of underlying genetic and environmental factors. At the Garvan Institute of Medical Research, Dr Etienne Masle-Farquhar and Dr Mandeep

New sequencing technologies now enable scientists to zoom in on the immune system’s hidden triggers of rheumatoid arthritis. Researchers are investigating immune cells that go rogue during painful and unpredictable disease flares. These innovations may allow prediction and prevention of flares – to tackle a critical problem affecting millions living with rheumatoid arthritis.

A killer T cell (centre) hunting a target cell. © NIH Image Gallery

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Singh are collaborating closely with Dr Laila Girgis from St Vincent’s Hospital Sydney and with clinicians from a growing network of hospitals around the country. Together, they are studying immune dysregulation during severe and unpredictable disease flares.

FROM ROUTINE DISPOSAL TO RESEARCH GOLD

When a flare hits, clinicians sometimes remove fluid from patients’ inflamed joints to relieve pain, swelling and pressure. Historically, this fluid was discarded as medical waste, but it has now become a precious investigative resource. Within hours of being collected, the fluid is brought to Garvan for DNA sequencing of thousands of immune cells – to identify any inflammatory cells harbouring rare gene mutations that disrupt the immune system’s subtle balance, and that may drive autoimmune disease.

THE GENETIC CONNECTION

Recent research offers hope. In 2022, the Garvan team demonstrated that mutations in a gene called STAT3 cause ‘killer’ CD8 T cells to multiply and target the body’s own tissues, thus driving autoimmune pathology. These mutations were previously linked to several autoimmune diseases, including a severe form of rheumatoid arthritis called Felty’s syndrome. Strikingly, when the same mutations occur in a form of CD8 T cell leukaemia, they are associated with a 40-fold higher incidence of rheumatoid arthritis relative to the general population. This suggests that rogue CD8 killer cells with STAT3 or other mutations may drive rheumatoid arthritis affecting thousands of Australians.

A significant hurdle in studying autoimmune diseases has been in identifying the sometimes incredibly rare cells that have acquired disease-causing genetic mutations.

Until recently, this was an insurmountable challenge, but recent technological advances are now allowing Garvan scientists to track rogue immune cells that previously remained invisible amongst thousands of healthy cells, at unprecedented resolution.

This opens the door to finally identifying hidden genetic and cellular triggers of rheumatoid arthritis flares.

SINGLE-CELL SEQUENCING TO THE RESCUE

The Garvan team recently validated sensitive approaches to pinpoint and analyse rogue immune cells at singlecell resolution. These methods rely on DNA and protein “barcodes” to track abnormal cells and their progeny between the blood and inflamed tissue. These methods can identify disease-causing DNA mutations in any of these cells and measure their effect on thousands of genes and hundreds of proteins per cell.

With incubator funding from the Triple I Clinical Academic Group, Dr Singh and Dr Masle-Farquhar are now using these methods to pinpoint the molecular pathways causing immune cells to go rogue in rheumatoid arthritis. Encouragingly, some of these pathways may be targeted using existing drugs: JAK inhibitors that are known to suppress the STAT3 pathway are already used in clinics to treat several diseases.

The team aims to expand this investigation to other common causes of inflammatory arthritis: gout, osteoarthritis and psoriatic arthritis.

For Linda and the 400,000 other Australians living with rheumatoid arthritis, innovations cannot come soon enough. With the ability to predict treatment responses and develop evidence-based, tailored strategies to eliminate flare-driving cells, controlling patients’ debilitating flares will be within reach.

Author: Dr Etienne Masle-Farquhar, Postdoctoral Researcher at Garvan Collaborators: Dr Mandeep Singh, Postdoctoral Researcher at Garvan. Dr Laila Girgis, Head of the St Vincent’s Hospital Rheumatology Department.

Dr Etienne MasleFarquhar.

Hands of an individual with rheumatoid arthritis.

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COMMON CANCER RISK AND THE IMMUNE SYSTEM:

WHAT WE YET DON’T KNOW?

Circulating Breast Cancer Cells

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Although the incidence of breast cancer is generally increasing,1,2 innovations in cancer research, prevention and treatments have been crucial to reducing mortalities. Recent estimates suggest that over 90% of all people diagnosed with breast cancer in Australia survive after 5 years of diagnosis.1

Over the last 15 years, my team at The QIMR Berghofer Medical Research Institute have made progress in identifying genes that can affect a person’s risk of developing hereditary breast cancer, as well as breast cancers that are not clearly inherited, known as ‘sporadic’ cancer. However, there is more work to do.

INNOVATION AT THE QIMR BERGHOFER

I have always been fascinated with genetics. From an early age during my school days in Ireland, science was always an interest of mine. Yet, I only realised my passion for cancer genetics after I moved to Australia. Throughout my career, I researched different cancers, including basal cell, gastric and ovarian cancer, but I focused my attention on breast cancer when Australia became a very favourable place to do this kind of research.

Since 1989 I have been working at QMIR Berghofer, and for the half of my time there I have been involved in Genome-Wide Association Studies. These studies compare the genomes to look for common variants associated with an increased risk of breast cancer in the general population, but also variants that might modify their risk if they inherit a major mutation.

Solving increasingly complex and multifaceted problems can’t happen in isolation. My team of expert collaborators have been very successful in identifying over 240 novel variants associated with breast cancer risk in the general population,3 which differ from the rare mutations previously linked to breast cancer, such as Breast Cancer Gene 1 (BRCA1) and Breast Cancer Gene 2 (BRCA2).

The collaboration among peers is crucial in medical research because teamwork allows us to share diverse skills and resources to form new ideas and ways of understanding problems. It is not a single-handed endeavour anymore.

1 AIHW. (2022). Cancer data in Australia. Retrieved from: https://www. aihw.gov.au/reports/cancer/cancer-data-in-australia/contents/about

2 Global Burden of Disease. (2019). GBD results. Retrieved from: https://vizhub.healthdata.org/gbd-results/

3 Fachal, L. et al. 2020. Fine-mapping of 150 breast cancer risk regions identifies 191 likely target genes. Nature Genetics, 52(1), pp. 56–73. Retrieved from: https://doi.org/10.1038/s41588-019-0537-1

I am proud to have been working with a talented team, including Dr Jonathan Beesley, Genome Variation Team Head, and Dr Wei Shi, Cell Biologist and Molecular Biologist, because their ongoing support has been critical to our achievements.

WHAT’S NEXT FOR US

We are delighted that our achievements have been recognised by a prestigious industry award available to the Australian medical research community, the GSK Award for Research Excellence. It is exciting to know that medical researchers are acknowledged for their dedication to health of Australians, and supported to continue channelling our passion into the important work we do.

Winning the award is an honour, but in practical terms, it has come at the perfect time because my team and others at the institute need a new piece of equipment for our work that we could not have afforded without the funding provided by the award.

We are currently undertaking research that looks at the how certain breast cancer risk genes influence the way cancerous cells or tumours are destroyed by the immune system. This is very exciting work. By receiving support to purchase the xCELLigence Real Time Cell Analysis (RTCA) instrument, we will be able to accelerate the collection of valuable insights into the mechanisms behind breast cancer risk.

Unless we know how these risk genes operate, we won’t be able to translate the knowledge we have gained into tangible treatment options and personalised preventative solutions for patients.

THE FUTURE OF BREAST CANCER RESEARCH

My hopes are that we can use our current and future knowledge to try to prevent breast cancer in women who are at high risk and allow them to avoid the very intensive surgery that they may otherwise face.

Predicting the next breakthrough in research is always a challenge. However, increasing our knowledge of the biology behind breast cancer and cancerous cells’ behaviour will ultimately provide us with a much better understanding of how breast cancer develops. This will give us many opportunities to develop or repurpose drugs to not only treat but also, to potentially prevent breast cancer.

Innovation in breast cancer research has come a long way since the 90s, and it has been thrilling to be part of these developments and see breakthroughs being translated into improved patient outcomes. Insights from breast cancer research can also be applied to other cancers that are equally as devastating, and I hope other cancers can achieve the same recognition and progress as breast cancer has.

Author: Professor Georgia Chenevix-Trench, Distinguished Scientist, QIMR Berghofer Medical Research Institute

Breast cancer continues to be a leading cause of disease burden in Australia. It was the second most diagnosed cancer in 2022,1 and it currently affects more than 170,000 people and their families across the country.2

Professor Georgia ChenevixTrench, the winner of the 2022 GSK Award for Research Excellence

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HAPPY AS A CLAM

The UniSC research stopping stress in oysters, that could end up in human hospitals.

Dr Tomer Abramov, working on Sydney Rock Oysters.

Researchers from the University of the Sunshine Coast may have found a new way to treat heart health and immune function in humans, from a very unusual source.

Lead researcher Dr Tomer Abramov, Professor Abigail Elizur and others from UniSC’s Centre for Bioinnovation were exploring the effects of the naturally-occurring hormone (Teneurin C-Terminal Associated Peptide or ‘TCAP’) on Sydney Rock Oysters when they discovered something unexpected.

“The idea of using TCAP on oysters was to eliminate stress during the growth period, so they can conserve that energy for growing instead of wasting it combatting distress,” Dr Abramov said.

That part worked exactly as planned. What they didn’t anticipate was how wide-ranging TCAP’s anti-stress effects were.

“We showed for the first time that TCAP can prevent stress by impacting the oyster’s immune system. When we gave oysters a very small amount and stressed them – their immune cells behaved as if the oyster was not stressed at all,” Professor Elizur said.

“What we found was quite surprising. The effects on the immune function were novel. No one had looked at this, not even in mammals or birds,” Dr Abramov said. It wasn’t all they found.

A NEW DIRECTION

While TCAP was present throughout all the different tissues in the oysters’ bodies, the level varied significantly between them.

This pointed Dr Abramov in a new direction again.

“When we looked at the gene expression, we found that TCAP was highly expressed in the heart. This was strange – we weren’t expecting that. So that led to another paper investigating TCAP’s role in cardiac tissue,” Dr Abramov said.

We discovered TCAP slowed their heart rate down by up to 63%. The average heart beat of a Sydney Rock Oysters is 14 beats per minute. After the delivery of TCAP, that was reduced down to about 6 beats per minute.

“In a stressed animal the heart rate is elevated, whereas the oysters treated with TCAP were demonstrating the opposite, something that is more indicative of relaxation.

“We also looked at the types of genes that are turned on or off after TCAP delivery under stress and discovered it can regulate an array of protective genes including antioxidants, heat shock protein, immune function, apoptosis, and genes involved in metabolism.”

Establishing this wasn’t without its challenges.

“Not many people are even aware that oysters have a heart. We practically had to invent an oyster heart monitor to measure it,” Professor Elizur said.

BUT WHAT DOES ALL THIS MEAN FOR HUMANS?

“Not only are there implications in aquaculture, but what’s more profound in my opinion is using this and translating it to higher animals, and in human biomedicine,” Dr Abramov said.

Due to TCAP being an ancient and ‘highly-conserved’ hormone in evolutionary terms (it exists in basically all animals except jellyfish and sponges) its function and effects in other animals is likely similar.

“Because of its conserved nature, the antistress effects also work in higher animals and even humans,” Professor Elizur said.

“We could use TCAP to as a medicine to control the immune system for certain diseases or use it in patients with heart diseases. However, these avenues have not been studied in humans yet and more studies are needed before we can conclude these applications.

“Currently, TCAP is being studied in human clinical trials to help treat depression and anxiety, and also to control glucose levels as an antidiabetic. Our studies show that TCAP can do much more.”

The idea of using TCAP to treat stress in oysters came from similar experiments on rats showing its anti-stress effects on their nervous system and behaviour.

“From treating heart conditions to diseases affecting immune function, this opens up new avenues for research in both veterinary and human clinical use,” Dr Abramov said. More work needs to be done to explore the viability of treating such conditions with TCAP, but its immediate potential in aquaculture is apparent.

“This has big implications,” Professor Elizur said.

“Oysters also get stressed – in aquaculture from handling, or in the wild from pollution and natural events. Stress can badly affect oysters, including their reproduction. A natural compound that could reduce their stress would have meaningful applications in aquaculture, to simply “relax” the oysters so they could focus their energy on growth and reproduction.

“As TCAP’s action seems to be conserved across species, it could be applied to other species like fish and crustaceans which make up a big part of the aquaculture sector.”

Author: Tom Fowles, Media and Communications, University of the Sunshine Coast.

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NSW HEALTH’S MEDICAL DEVICES FUND

Oli™ is a non-invasive wearable device that aims to provide earlywarnings for complications that occur during pregnancy and labour

Supporting health innovations

For medical research to have a significant impact on a state’s health system and economy there must be linkages between research, innovation, and commercialisation. These linkages create the environment for improving patient care, health and wellbeing, and generate economic, social and environmental benefits.

NSW Health’s Office for Health and Medical Research has played a key role in supporting medical research and innovation so research can be translated into clinical impact. This has been achieved by establishing unprecedented programs and initiatives that encourage linkages between NSW device companies, research hubs, commercialisation offices and domestic and offshore investors in medical devices.

Delivered by NSW Health’s Office for Health and Medical Research for over 10 years, the Medical Devices Fund is built on principles that encourage and support investment in the development and commercialisation of medical devices in NSW. The Fund aims to bring local innovation to market and improve the uptake of cost-effective technology by the health system, thereby boosting economic growth and improving patient outcomes, with some past recipients gaining high-profile investors.

RIGOROUS ASSESSMENT LEADS TO SUCCESS

The Fund’s Expert Panel includes members who have deep expertise in commercialisation and venture capital, and speciality clinicians. The Panel provides in-depth reviews of applications, adding rigour and sense-checks to the process and assessing areas such as whether the medical device will address a clinical problem and provide a solution appealing to clinicians and to the health system. Since its launch in 2012, the Fund has awarded $78 million to 43 medical devices and some of the key impacts are:

• Recipients have raised over $900 million in capital from private investment sources and government grant funding

• Employment has increased 5-fold in recipient companies

• Nearly 311,000 patients have been treated globally

• Two recipients have repaid just over $4 million and at least one more company will begin repaying its grant in the next 12 months.

EARLY WARNING OF COMPLICATIONS IN PREGNANCY

The Fund has supported many health innovations including Oli™ by Baymatob Pty Ltd. Baymatob is an Australian company founded after a traumatic birth experience of the founder and mechatronic engineer, Dr

Sarah McDonald. While current technology in this space relies on retrospective measures, subjective interpretation and directly impacts the mother’s birth experience, Oli™ aims to assess and treat individual cases with predictive measures without impacting the mother’s activities. The clinical activities for this project have been conducted at and with the support of The Royal Hospital for Women (Pilot Study), The Royal North Shore Hospital (Pilot Study), and the Royal Price Alfred (original proof of concept study).

Baymatob is currently developing commercial-ready devices and has recently completed a 500 patient Pilot Study in NSW, gaining the support of local health bodies, and working with clinical advisors for Oli™. This revolutionary non-invasive device aims to allows real time observation of uterine activity, foetal movements, exertion, and maternal/foetal wellbeing, and how these correlate to the complications of pregnancy and labour.

Oli™ is expected to improve patient outcomes and result in savings to the health system by providing world-first early warnings for complications that, until Oli, have been difficult to predict until after the complication has occurred. The device provides a way to identify how a woman’s pregnancy and labour are progressing, aiming to provide clinicians and hospital staff insights into:

• providing an early warning of post-partum haemorrhage, before birth or bleeding occur

• identifying maternal and foetal complications early and tracking performance of interventions, and

• scheduling required resources at the time they are required.

NSW Health’s Medical Devices Fund has been nurturing the health and medical research sector through supporting local innovations that positively contribute to patient outcomes and the economy. It is integral to assisting the sector commercialise medical devices and the role the Fund plays is more than purely awarding funding. Through NSW Health’s Office for Health and Medical Research, alumni of the Fund are assisted with tools to navigate the healthcare system and ongoing support to ensure they are set up for success.

For further information, please visit: https://www. medicalresearch.nsw.gov.au/medical-devices-fund/

Authors: Fay Ballouk – Policy Officer, Enterprise, Office for Health and Medical Research (OHMR).

Anne O’Neill – Director, Enterprise, International Partnerships and Clinical Trials, Office for Health and Medical Research (OHMR).

to improve patient outcomes for over a decade.

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SLEEP BETTER,

FEEL BETTER

HOW SLEEP NINJA® WAS DEVELOPED TO HELP TEENS MASTER THEIR SLEEP

Associate Prof.

Aliza WernerSeidler

THE NEED FOR SLEEP

Quality sleep is essential for overall wellbeing, particularly during early high school, when half of all mental illnesses begin. At this stage of development, 40% of young people face significant sleep problems that increase their risk of anxiety or depression.1 By promoting good sleep habits, we can help lay the foundation for emotional, social, and physical wellbeing and academic performance, both now and in the future.

RESEARCH AND DEVELOPMENT –BRIDGING THE GAP

Although cognitive behavioural therapy for insomnia (CBT-I) is the gold standard for effectively reducing insomnia symptoms, there were no evidence-based digital CBT-I programs specifically designed for young people. To address this gap, Black Dog Institute, a leader in mental health research, collaborated with young people, their parents/carers, and sleep experts to codesign an intervention.

The process began in 2016, during which researchers ran a series of focus groups with young people, consulted with sleep experts, and engaged graphic and app design specialists. 2 This led to the design of the preliminary Sleep Ninja® app piloted in a study with 50 adolescents to assess its feasibility, acceptability, and preliminary outcomes in young people with sleep difficulties. The results were promising, showing that the intervention was feasible and acceptable to young people and that app use was associated with improved sleep and reduced depression and anxiety.3

Researchers then made changes and refinements to the app based on the feedback collected from young people. To further support the upcoming randomised control trial, a systematic review was also conducted to identify studies reporting the effectiveness of digitally delivered CBT-I for young people with sleep disturbances. The findings showed that CBT-I improved sleep efficiency, sleep quality, sleep-onset latency, and total sleep time, paving the way for Sleep Ninja in its latest iteration.1

In the last phase, a randomised control trial was conducted to test the effectiveness of Sleep Ninja on sleep and mental health outcomes involving 264 young people experiencing sleep difficulties. The trial results indicated that adolescents who used the app experienced an improvement in sleep and a reduction in symptoms of depression compared to the control group.4

LOOKING TO THE FUTURE –COLLABORATING AND COMMUNICATING

Ongoing and future research will aim to corroborate existing findings and investigate the effectiveness of the intervention in different cohorts. One such prospective trial seeks to investigate the efficacy of Sleep Ninja in improving sleep and mental health outcomes in Australian children (aged 10 to 11 years) with disrupted sleep relative to an attention-matched control. Additionally, a separate international study will aim to understand whether Sleep Ninja could improve sleep in young people and Rangatahi Māori and whether improving sleep can also improve their mental health and wellbeing.

Beyond the research, Black Dog Institute’s multidisciplinary team covers many specialties, including marketing, service implementation, quality assurance and program evaluation. These teams are now leading engagement and partnerships with mental health services and professional groups to promote the app using various communication resources to get Sleep Ninja hands of young people nationally.

LEARN MORE ABOUT SLEEP NINJA

Sleep Ninja is a free, evidence-based smartphone app shown to be effective in helping young people with sleep problems. Over six weeks, Sleep Ninja teaches skills based on cognitive behavioural therapy for insomnia (CBT-I), which promotes sleep quality and healthy sleep habits and reduces signs of depression.

For further information on Sleep Ninja, how to download the app or access our delivery partner kit visit the Sleep Ninja website

1 Werner-Seidler, A., Johnston, L., & Christensen, H. (2018). Digitallydelivered cognitive-behavioural therapy for youth insomnia: A systematic review. Internet Interv. 2018;11:71-78. DOI: 10.1016/j. invent.2018.01.007

2 Werner-Seidler, A, et al. A Smartphone App for Adolescents With Sleep Disturbance: Development of the Sleep Ninja. JMIR Ment Health. 2017;4(3):e28. DOI: 10.2196/mental.7614

3 Werner-Seidler, A., Wong, Q., Johnston, L., O’Dea, B., Torok, M. & Christensen, H. 2019. Pilot evaluation of the Sleep Ninja: A smartphone-application for adolescent insomnia symptoms. BMJ Open. 2019;9(5):e026502. DOI: 10.1136/bmjopen-2018-026502

4 Werner-Seidler, A, et al. The Effects of a Sleep-Focused Smartphone Application on Insomnia and Depressive Symptoms: A Randomised Controlled Trial and Mediation Analysis. J Child Psychol Psychiatry. 2023. DOI: 10.1111/jcpp.13795. Online ahead of print.

Author: Associate Prof. Werner-Seidler is an NHMRC Emerging Leader Fellow and Clinical Psychologist. The Black Dog Institute

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IMPOSTERS

STUDY

A trial that is investigating the efficacy of SCDs for patients having major surgery is about to be launched throughout Hunter New England, Central Coast and the Mid North Coast Local Health Districts (LHDs).

There is ongoing discussion in the surgical community regarding the usefulness of intermittent compression devices (SCDs) in preventing venous thromboembolism (VTE) during major surgery.

Researchers Jeanene Douglas and Natalie Lott from Hunter Medical Research Institute, the University of Newcastle and John Hunter Hospital have launched an investigation into the impact of Intermittent Pneumatic Compression Devices (also known as SCUDs) on postsurgical veinous thrombo-embolism (VTE), including deep vein thrombosis and Pulmonary Embolism.

IMPOSTERS

An intermittent pneumatic compression (IPC) device, also called a compression sleeve or sequential compression device (SCD), are inflatable sleeves that are worn on your lower legs while recovering from an illness or surgery in the hospital.

The study was suggested by colorectal surgeon, Professor Stephen Smith. He says,

people having surgery are split into two groups – one group is wearing the SCUDs and the other group isn’t. However, they will all have standard treatment including administration of Heparin (a low-dose blood thinner) and all will be wearing compression stockings.

Lott says, “What we have discovered that there is very poor research to support guidelines for the prevention of clots post-surgery and the use of SCUDs. What we’re aiming to prove is whether SCUDs are needed or not. Nurses and patients dislike them. Patients are immobilised when they should be out of bed and moving. This not only promotes circulation but prevents other postsurgery complications such as chest infections and bowel complications, so it is important to understand how much of an impact they really have.”

The part of the scuds that go around the patient’s legs are made of plastic and are single- use. They are disposed of in contaminated waste which is then incinerated or sent to general waste that goes to landfill. Both options have significant environmental impacts.

POTENTIAL SAVINGS AND ENVIRONMENTAL IMPACTS

At $110 per box, NSW Health could potentially save an estimated $22M per annum if they were only used in specific cases where there was evidence supporting their use, versus the way they are used now as an unproven third-tier protective measure against VTE. Also, fitting/ removing and monitoring patients with compression devices adds an estimated extra 20,000 hours of nursing time annually across NSW. Additionally, the disposal costs of associated waste (70kg of packaging annually and 1,645kg of contaminated devices which must be incinerated) are also significant and will be assessed.

The researchers said they wanted to include mixture of rural and city hospitals in the study to assess the difference in results between different communities. Three research nurses will be employed in Tamworth, Port Macquarie and Gosford hospitals to run the program. Lott and Douglas are running the study at Calvary Mater and John Hunter Hospital.

The nurses are recording the amount of time patients wear the scuds and they are also monitoring all patients at day 30 and 90 after their surgeries. The patients GP will be sent a letter upon discharge, so their physician is aware they have been in a trial. Participants will also be given a “How to prevent blood clots at home” fact sheet. This is in case they notice any symptoms of venous thromboembolism. This includes VTE symptoms to look out for include swelling, redness, and stiffness in the legs, as well as chest pain and shortness of breath.

The study investigates post-surgical outcomes for 4,130 patients over 2.5 years across five public hospitals, including Tamworth, Port Macquarie, Gosford, Calvary Mater and John Hunter Hospital in Newcastle. Eligible

Author: Natalie Lott, Researcher Coordinator at NSW Health and Jeanne Douglas, Research Coordinator at NSW Health.

We are constantly looking for proof of outcomes with any surgical intervention, in addition to trying to minimise over treatment and waste.”

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DRIVING A LEARNING HEALTHCARE SYSTEM

Through partnerships, UQ’s Queensland Digital Health Centre is harnessing the power of digital health

Aremarkable group of researchers and industry partners has been assembled to develop a cohesive ‘digitally enabled learning healthcare system’.

QDHeC sees a digitally enabled learning health system as one that is cohesive and crosses enterprise systems, platforms and boundaries. The aim is to help equip organisations to achieve the Quadruple Aim of Healthcare which is better health outcomes, improved patient experience, improved clinician experience and lower costs.

The Centre’s inaugural director, Associate Professor Clair Sullivan, is a UQ researcher and consultant endocrinologist based at the Royal Brisbane and Women’s Hospital (RBWH) and Metro North Health’s clinical informatics director. Dr Sullivan is working side-by-side with QDHeC’s Deputy Director and Head of Research, Professor Jason Pole, an internationally recognised expert in clinical surveillance and paediatric oncology.

Professor Pole said: “QDHeC’s work – together with the work of colleagues around Australia and globally – is laying the foundation for a digital health revolution where researchers will be able to accelerate learning and translate research findings into clinical practice at speed.” He said digital health is increasingly recognised around the world as the backbone of optimal healthcare delivery, opening new ways to deliver care to more people, more efficiently.

LEVERGAING BIG DATA CAN TRANSFORM INDUSTRIES

But while leveraging big data is rapidly transforming a host of industries, medical research has yet to capitalise on potentially available digital information because of the multitude of siloed systems and complex bureaucracies.

One of QDHeC’s key goals is to enable ways to safely share information to speed up health research.

QDHeC is engaging with multiple partners to encourage the building of a learning healthcare system,” Professor Pole said.

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QDHeC is a new centre within UQ’s Centre for Health Services Research and its partners include Queensland Health, global medical technology company Stryker, CSIRO’s Australian e-Health Research Centre, Health and Wellbeing Queensland, the Queensland Cyber Infrastructure Foundation and Health Translation Queensland.

QDHeC was one of seven programs selected for support by UQ’s Health Research Accelerator (HERA) program in 2022. The HERA investment of $50 million over seven years aims to address the most pressing health and medical challenges at the same time as creating new economic opportunities.

BUILDING ALLIANCES TO STRENGTHEN OUTCOMES

Being part of the UQ HERA program has enabled QDHeC to build alliances with research partners, Queensland government agencies as well as with industry leaders such as Stryker. And Stryker’s R&D lab in Herston, Brisbane is in the same mega health and tech precinct which houses the RBWH, UQ’s Faculty of Medicine, and multiple research institutes and centres, including QDHeC. Stryker Research Development Manager Dr Julia Hocking said: “The partnership with QDHeC aligns with Stryker’s goal of strengthening collaboration between business, universities, hospitals and government.

“The new Stryker R&D Lab, supported by the Queensland Government, is testament to the world-leading scientific research talent and medical infrastructure we have available here for global and local companies and will help speed up digital transformation and a learning healthcare system.

Our partnership with QDHeC includes providing access to the R&D Lab to the many partners involved in digital health research and we support QDHeC’s drive to create a learning healthcare system,” Dr Hocking said.

As part of the work to build a learning healthcare system, QDHeC has collaborated with research partners to map the current state of the health research digital ecosystem in a project led by Health Translation Queensland (HTQ) and funded by Queensland Health.

MAPPING QUEENSLAND'S HEALTH RESEARCH DIGITAL ECOSYSTEM.

HTQ Executive Director Professor John Prins said a map of Queensland’s health research digital systems and capabilities will enable researchers, clinicians, institutions, and government to more effectively share and access relevant digital data to improve healthcare and health outcomes. The aim is to help drive healthcare value by encouraging collaboration and data sharing between health and research organisations.

Improving the health of the wider community is a key goal of all health research, and so the partnership between QDHeC and Health and Wellbeing Queensland is pivotal. Health and Wellbeing Queensland CEO Dr Robyn Littlewood said by working together, partners were increasing capacity and knowhow so that clinicians could transform healthcare and public health research.

“We are working with QDHeC, for example, on developing a Healthy Weight Dashboard to monitor healthy weight and assess the feasibility of analytical tools to help people make better choices and live longer, healthier lives.

“In such a complex environment, the power of data and dashboards allows much more focused investment and ability to rapidly understand impact and outcomes. This is critical to tackle the high demands challenging healthcare right now,” Dr Littlewood said.

Colleen Clur is Manager

and

Author:

Communications

Engagement at UQ’s, Queensland Digital Health Centre

Figure 1: Quadruple Aim of Healthcare is a widely accepted approach to drive healthcare redesign.

(L to R) Two of the partners in the transformation of healthcare and research, Health and Wellbeing Queensland CEO Dr Robyn Littlewood and Queensland Digital Health Centre Director Associate Professor Clair Sullivan at UQ’s Customs House, Brisbane.

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STOPPING THE CYCLE

Professor Paul Salmon and Dr Daniel Di Domenico using the CRIT App

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UniSC is helping make the roads safer for bicycle riders

Healthcare isn’t confined to labs, hospitals, clinics and surgeries. Good healthcare – and healthcare innovation- can be achieved through policy, research and prevention before a medical professional even comes into the picture. Through a greater understanding of risk factors, we can prevent accident, injury and sickness before they occur. Nowhere is that more pertinent than on our roads and few groups fit the bill of vulnerable road users better than Australia’s cyclists, who can be up to 12 times more at risk of death than car drivers.

UNDERSTANDING THE CAUSES

In a bid to minimise this risk, we first need to understand what the causes are. Not just in road accidents involving cyclists, but in the near-misses and close calls that often go unreported. That’s why Professor Paul Salmon, Dr Scott McLean, and Associate Professor Gemma Read at the University of the Sunshine Coast’s Centre for Human Factors and Sociotechnical Systems, have helped develop the Cyclist Reporting of Incidents Tools or ‘CRIT’.

Dr Read says there is a critical knowledge gap in understanding the factors that contribute to cycling crashes and near misses.

Current data systems don’t capture a full range of contributory factors for cyclist crashes, and data is only currently collected for serious crashes –those resulting in fatalities, serious injuries,” she said.

“This limits the evidence base for policy decision making around cycling safety i.e. where best to invest to improve safety, which in turn can improve cycling uptake which has important health and environmental benefits.”

The reporting tool takes a wide-ranging look at data collection, with cyclists using the app to record the time, location, description of the incident, factors that they feel caused the incident, and the severity of the incident. This data is then collated within the app and presented back to users to communicate trends and help them to modify their behaviour to enhance safety.

While the full 12-month results are still being analysed, the figures from the 6-month report paint a snapshot of what cyclists feel is creating risk for them on the roads.

“Cyclists perceive driver behaviour to be a common contributory factor in their crashes and near misses. This includes drivers pulling out in front of cyclists, failing to give way, and non-compliance with road rules,” Professor Salmon said.

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“Driver situation awareness (or lack thereof) is another commonly reported factor. Cyclists feel that drivers were not aware of them.”

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But Professor Salmon stressed this is far from a simplistic case of cyclists = good, drivers = bad.

were also often reported as contributing factors. These include cyclist situational awareness, handling skills, knowledge of the road rules, physical condition and speed.”

“We need to move away from the idea of a war between drivers and cyclists. Both are operating in a system that is ill-equipped to support safe interactions between them,” Professor Salmon said.

“I think a key message is that cyclist safety is a shared responsibility,” Dr Read said.

“We see contributing factors associated with cyclists themselves, other cyclists, drivers and pedestrians. But we also have factors associated with road infrastructure and maintenance, so there are a range of stakeholders whose decisions and actions can have an important impact on whether vulnerable road users, like cyclists, stay safe on the roads.”

A FULLER PICTURE IS EMERGING

It’s hoped everyone from policy makers, to town planners, down to everyday road users will benefit from being able to access a fuller picture of what’s happening to cyclists on our roads. If this leads to better and more strategic infrastructure or even better drive awareness, the data has the potential to help stop harm befalling cyclists before it happens.

“The information gained from the CRIT app will fill an existing data gap and provide road safety stakeholders with critical insights to support decision-making around interventions designed to enhance cyclist safety.”

Though the trial is wrapping up, Dr Read hopes it can continue in some capacity to inform future research.

“The app will remain open and collecting data while we analyse the results. We hope to continue the project and based on the trial results will be looking for opportunities to support it long term.”

The full findings of the CRIT 12-month trial will be released in the coming months.

Author: Tom Fowles, Media and Communications, University of the Sunshine Coast

How

TELESTROKE AND TELE-ECG PROGRAMS BRING HOPE TO THE BUSH

Hunter Medical Research Institute Researchers and John Hunter Hospital specialists, Neurologist Professor Neil Spratt, and Cardiologist Professor Andrew Boyle, are two of the pioneers behind the TeleStroke and Tele-ECG programs that have transformed critical stroke and heart care in the Hunter New England region.

The Northern NSW TeleStroke pilot program assessed more than 1,500 patients from Hunter New England and mid-North coasts, between 2013 and 2020.

It’s success in delivering world standard acute care to rural patients helped to establish the case for the state and federally funded NSW Telestroke Service, which recently completed its rollout across NSW.

“Led by HNELHD Cardiology Liaison Officer, Fiona Dee, the Tele-ECG program has now assessed 6000 patients since 2018. Their study showed that the Tele-ECG model improved the diagnosis of heart attacks in rural hospitals, and this led to better outcomes for patients.

COMMENCING THE TELESTROKE PROGRAM

Professor Spratt says the TeleStroke program that started in 2013, was originally conceived as a pilot program between Taree and Newcastle, then grew to include Tamworth,

Professor

Armidale, Moree, Taree (Manning) Port Macquarie and Coffs Harbour, with neurologist support from Newcastle and Gosford. This took in three Local Health Districts.

The Newcastle and Gosford teams still make up the majority of the neurologists participating in the NSW statewide service, operating in 23 rural hospitals.

It has already assessed over 3,000 patients since its inception in 2020 and made 650 treatment recommendation for life-change reperfusion therapies, which would not previously have been available to many or most rural patients.

HOW TELESTROKE WORDS

The TeleStroke program works by having doctors triage stroke patients at a local level using an online program, and in consultation with one of a team of eleven neurologists working out of various locations in NSW performing the appropriate advanced brain scans using perfusion imaging.

Videoconference review of the patient and scans by the local and TeleStroke doctors are used to identify those with brain tissue that may be able to be saved, and who may be suitable for treatment with tPA (clot busting medication), thrombectomy (clot retrieval surgery) or both.

REDUCING DISABILITY FROM STROKE

The ultimate goal of the program is to use these highly effective therapies appropriately to reduce disability from stroke, and the data obtained so far indicates that treatment is resulting in patient outcomes for rural patients at least as good as those obtained in major metropolitan hospitals.

Professor Spratt says,

These days we use a tissue clock instead of a time clock. We are looking at the extent of tissue damage on the scans. We have changed our thinking about time to treatment because, with the right interventions and diagnosis, we can have up to 24 hours to administer treatment which is a game changer for people in rural and regional areas.”

Patients who need thrombectomies are transferred by road ambulance, fixed wing aircraft or helicopter to John Hunter Hospital, one of three Sydney Hospitals, or interstate, when appropriate, including transfers from places as far away as Moree to John Hunter.

The Tele-ECG program works by supporting nurses and GPs in rural hospital emergency departments, who may not see cardiac emergencies very often, to more accurately and rapidly diagnose heart attacks.

This is achieved by senior nursing staff from John Hunter Hospital Coronary Care Unit reviewing the ECG and blood tests remotely and discussing the case with the clinician in the rural hospital in real time. The result was less missed heart attacks, better treatment times, and improved outcomes for rural patients and the health care system.

Authors: Professor Andrew Boyle and Professor

Neil Spratt Hunter Medical Research Institute

Researchers and John Hunter Hospital specialists

Professor Neil Spratt

Professor Andrew Boyle

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RAPID INFLUENCE ON PALLIATIVE CARE AND CANCER CLINICAL PRACTICE

An

The Rapid Program at the University of Technology Sydney was established in 2011 as a Quality Improvement Program assessing realworld effects (benefits and harms) of medicines and non-pharmacological interventions used in palliative care and cancer symptom management.

There is a need to improve the evidence for prescribing and other interventions in palliative and supportive care. Post-marketing surveillance (pharmacovigilance) monitors the safety and effects of medicines. Pharmacovigilance is usually conducted via reporting of adverse events to therapeutic regulatory agencies such as the

international collaboration of clinicians is improving the evidence base for commonly used interventions in palliative care and cancer symptom management.

Therapeutic Goods Administration (TGA) in Australia. It is a retrospective process, as spontaneous reporting is unreliable with missing and/or incomplete data making it slow to accumulate. Other clinical trial methodologies that can be used to collect this data such as prospective randomised controlled trials are expensive, complex and time-consuming. In contrast, the Rapid Program engages clinicians directly to prospectively gather key data systematically during routine care.

INTERNATIONAL COLLABORATION FOR RAPID RESULTS

The Rapid Program is an international, multi-site collaboration, where clinicians from around the world can contribute de-identified data to specific ‘series’.

A ‘series’ comprises an intervention for a given indication, a predetermined and specific ‘indication dyad’. A number of series in both adult and paediatric settings have been conducted, are currently recruiting or in development. Series cover symptoms commonly experienced in palliative and supportive care such as pain, breathlessness, nausea, constipation, mood, delirium, appetite and cachexia, fatigue and sleep.

Therogramm is called “Rapid” because the aim is to see each series open, collect data, close, and be published as quickly as data collection allows, usually within two years or less, so that evidence is available to clinicians in a timely manner, supporting clinical decision making and improving patient care.

HOW RAPID WORKS

Rapid collects de-identified clinician-reported patient data. Each series is managed by its own series subcommittee who determine the relevant data collection points. Participating sites are provided with data collection forms and an online secure portal to enter data.

Clinicians record the harms and benefits for the dyad under study. Series routinely collect data at baseline (T0) prior to the intervention being commenced and at least two other time points (T1 and T2), selected based on the time course of expected benefit and harms for optimal data capture.

A series usually closes once data has been collected from ~100 patients. This number gives power to detect substantive signals and maximise efficiency. Data entered by all participating sites are then aggregated for analysis, write-up and publication. All sites that contribute data for a series are acknowledged in the publication of results.

RAPID'S UNIQUE AND SYSTEMIC COLLECTION OF DATA

Rapid is unique in health care, quality improvement and research. We are aware of no other program that systematically collects data in this way. The closest analogy is registries such as those for joint replacements

or drugs in pregnancy. Rapid is efficient, requiring only minimal central coordination and limited clinician time at participating sites. It is timely and has developed into an international community of practice. Series are driven by participating clinicians and published to add to clinical knowledge for interventions that are commonplace in the populations of interest.

As a demonstration of its reach and impact, Rapid is currently active in 113 sites across 16 countries with 15 publications to date.

Examples of findings from series have included red blood cell transfusions which demonstrated that 49% of blood transfusions in palliative care patients improved the primary target symptom for which the transfusion was prescribed, and 78% of transfusions improved at least one of the target symptoms. The harms observed were infrequent and mild.

In another study looking at the use of non-steroidal antiinflammatory drugs (NSAIDS) for pain in palliative care, it was found that at 14 days, 88% of patients had benefits from their use of which 22% reported no harms. No patients ceased their NSAIDS due to toxicity. And in a survey of Rapid site investigators, most (78%) contributing data to Rapid reported that participating in Rapid had made them more alert to the possible benefits and harms of interventions commonly used in palliative and supportive care.

RAPID'S BENEFITS?

Benefits from individual and site participation in Rapid go beyond the collection of timely data that can guide clinician’s choice in effective symptom management. As well as focusing clinical practice, Rapid engages clinicians to become involved in research, providing an accessible starting point for engagement with a research community that is supportive and collaborative. For sites, participation contributes to meeting accreditation standards, for example the National Safety and Quality Health Service (NSQHS) and revised Aged Care Quality (ACQ) standards. For further information and to get involved visit the Rapid Program webpage or email rapid@uts.edu.au

Authors: Linda Brown, National Manager IMPACCT Trials Coordination Centre, Palliative Care Clinical Studies Collaborative and Cancer Symptoms Trials, and Maria Gonzalez, Research Assistant at University of Technology Sydney; Rapid Program Management Team

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EXPLORING THE HUMAN GUT MICROBIOME

A NEW FRONTIER FOR RESEARCH.

Like most people in their mid 60’s, Kevin Young was thinking about what life in retirement would look like. Time spent with family, doing the things you love and realising your dreams. For Kevin, a 67-year-old agricultural scientist, this would be an orchard on his block in a beautiful town called Esperance on the south coast of WA. But the dream was disrupted when Kevin contracted recurrent Clostridioides difficile infection (rCDI).

Clostridioides difficile (C. difficile) is a serious bacterial infection within the gut. Overuse and misuse of broadspectrum antimicrobials increase the risk of C. difficile and annually it is reported in around 8,500 Australians, about 1,700 go on to develop rCDI which can be life threatening. Whilst undergoing treatment for bowel cancer in August 2021, Kevin had thought he was on the road to recovery

The emerging science suggests that the gut microbiome has a far greater impact on health than anyone previously imagined. Australian Red Cross Lifeblood explores how to improve the lives of Australians, through microbiome focussed research, using Faecal Microbiota Transplants (FMTs).

Image of Kevin Young (FMT recipient) with his granddaughter in Esperance WA.

only to contract the debilitating bacterial gut infection while in hospital.

relevance and impact. Medical research has never been more exciting!” – Professor

Emad M El-Omar, Director UNSW Microbiome Research Centre

The outlook for Kevin wasn’t good. His doctors tried multiple times to treat the infection using antibiotics. Each time he stopped his ongoing antibiotic treatment, the C. difficile would return. It was then that his doctors suggested an FMT transplant.

INNOVATIVE, LIFE-CHANGING TREATMENTS

Luckily for Kevin, in December 2021 he became one of the earliest recipients of FMT through Lifeblood’s new microbiome program.

“Within a few days, I was back at work. The result was immediate — bloody amazing.” Kevin said.

Since receiving his transplant, Kevin’s infection has not returned, and he can finally begin enjoying his retirement.

FMT successfully treats rCDI infection in over 90% of patients, which means being able to return to the many simple things we take for granted, like work, gardening, and simply enjoying life.

Lifeblood established their microbiome program in collaboration with Fiona Stanley Hospital. The FMT is manufactured in a state-of-the-art facility at the Rotary WA Health Innovation Centre in Perth and supplied Australiawide. Simply put, stool from a healthy donor is processed and tested, then given to clinicians to treat disease or relieve symptoms in patients just like Kevin.

THANK YOU TO OUR DONORS

Donors are our lifeblood. They’re indispensable. As with all our work at Lifeblood, these treatments simply wouldn’t exist without their generous contributions.

MICROBIAL MANIPULATION – THE NEXT FRONTIER

The emerging science suggests that the gut microbiome has a far greater impact on health than anyone previously imagined, and some describe microbial manipulation as the next frontier for scientific discovery.

“The microbiome touches on every aspect of human health and, best of all, it is eminently “manipulable”. The research has progressed from the discovery phase and is now deeply rooted in the translational pathway. Microbiome therapeutics will help us treat disease, alleviate suffering, and more importantly from a public health perspective, prevent disease. This has global

Lifeblood is thrilled to be contributing to exciting new science and medicine, offering the possibility of innovative treatments for some of the most challenging health conditions of our time. Through collaborations with clinicians and researchers across Australia, we’re exploring how this amazing treatment might be used for patients with ulcerative colitis, Crohn’s disease, depression, obesity, dementia and cancer. We’re also working with our partners, using metagenomic techniques to improve the quality, safety and efficacy of our FMT products.

Lifeblood continues to play a significant role in the Australian public health service, as we have for over 90 years. Our expertise and passion continue to see us transform ‘life-giving donations for life-changing outcomes’, and our work with Microbiome is no different. With microbiome and FMT transplants we understand that we’re at the precipice of discovery and breakthrough, to transform healthcare as we know it. The end point here, like everything we do, is to improve the quality of life for patients.” –

Adjunct Professor Stephen Cornelissen AM, Chief Executive Officer

To find out more about accessing Lifeblood faecal microbiota for transplant for your patients, or partnering for research opportunities, call 1300 441 227 or email us at microbiome@redcrossblood.org.au

Lifeblood is funded by Australian governments to provide blood, blood products and services to the Australian Community. For the Microbiome program Lifeblood has been grateful to receive generous contributions from Rotary WA, HBF and the McCusker Charitable Foundation. Lifeblood also acknowledges Fiona Stanley Hospital’s contribution and the Microbiome Clinical Advisory Board to the success of the Microbiome program.

Authors: Elizabeth Connolly: BSc MTU (Ireland); Microbiome Growth Partner at Australian Red Cross Lifeblood. Adèle Welch: BComm, DipML (French), CA The University of Melbourne.; Microbiome Product Owner at Australian Red Cross Lifeblood.

When the C. diff hit, it hit incredibly hard. I didn’t think you could get that crook and not die.”

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EATING THROUGH THE BURDEN OF INFLAMMATORY BOWEL DISEASE ONE ‘BYTE’ AT A TIME

A SMALL CHARITY WITH BIG IDEAS AND EVEN BIGGER DATA!

Around 1 in 200 Australians currently live with an Inflammatory Bowel Disease (IBD) such as Crohn’s disease (CD) or ulcerative colitis (UC), and incidence is rising. People with IBD may experience symptoms including but not limited to:

• Diarrhoea

• Bloating

• Abdominal pain

• Fatigue

• Weight loss

• Mucous or blood in the stool

People with IBD may also experience other physical, nutritional and psychological impacts. Importantly, IBD is chronic and there currently exists no cure. This means people with IBD require lifelong engagement in care.

Crohn’s Colitis Cure (CCCure) is an Australian charity whose mission is to transform patient outcomes in IBD and be instrumental in finding a cure. Established in 2011, CCCure set out to create an innovative technology asset (now known as Crohn’s Colitis Care, or CCCare for short) that would enhance patient care and generate a realworld data registry for researchers. Fast-forward to now, and CCCare is being used in 19 paediatric and adult IBD care centres across Australia and New Zealand, with data documented for almost 12,000 people.

WHAT IS CCCARE?

Co-designed by clinicians and people with IBD, CCCare is world-first, cloud-based electronic medical record designed with built-in prompts and IBD-specific modules aimed at improving workflow and clinical outcomes. CCCare is integrated into care and used by clinicians at the point of patient contact to perform clinical assessments and generate patient-specific care plans. Notably, people with IBD have access to a ‘consumer portal’, where they can confirm details, enter symptom related data and complete validated questionnaires pertaining to things like mental health, quality of life and nutrition. People with IBD also have access to reputable, reliable resources related to their disease and its management through the portal.

What is most unique about CCCare is the fact that all

How does a small organisation with big ideas transform healthcare? It’s simple –by breaking down barriers between patients, clinicians and researchers using data.

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data entered into the platform are de-identified and stored in a dynamic clinical quality registry on a daily basis. Here, the data are rich and granular, and can be used to perform clinical care audits, benchmarking and real-world retrospective studies, all of which align with CCCure’s mission.

HOW CAN CCCARE ASSIST PEOPLE WITH IBD, THEIR CLINICIANS AND RESEARCHERS?

Having care documented and delivered in a consistent and structured fashion greatly reduces variation in care. Having such data stored on a cloud-based platform means that people with IBD now have a portable and life-long medical record which can follow them wherever they go. For example, this means that paediatric patients transitioning to adult care services can have their records transferred at the click of a button, without the loss of any important information and with minimal disruption to care. Furthermore, access to the consumer portal improves communication with the care team and helps improve consultation depth and efficiency because consultants have access to “patient-reported outcomes” beforehand.

Clinicians also experience improved workflow from inbuilt structured assessments and reminders facilitating streamlined communication between site and patient. CCCare is able to summarise all data entered into a formatted consultation letter which can be emailed to general practitioners and patients then and there. This eliminates time spent on letter transcribing, printing and posting. With built-in care prompts encouraging safe and best-practice care, CCCare can also be used as a training and guided-practice tool for junior staff, or for clinicians working in regional/remote areas who may not have explicit IBD training. Given data are analysed and displayed in a visual format within the registry, clinicians

can also easily perform audit and quality improvement. Finally, researchers now have access to the world’s largest longitudinal, real-world, IBD-specific data set, allowing for endless research opportunities. For example, researchers can compare clinical outcomes with different medications and therapies, or could even implement health economic data analysis to better resource care.

WHERE TO FROM HERE?

CCCure have built a software development roadmap, and plans are in place to integrate with external pathology and radiology providers. This would not only allow clinical results to be automatically uploaded to CCCare, but would also eliminate the risks that come with manual data entry (e.g. human error). Plans are also in place to enhance the consumer portal. This would be co-designed with consumers with the ultimate goal of empowering patients to play an active role in their care journey.

One major goal is to link CCCare with currently siloed ‘-omics’ data, creating the first biobank to link saliva, stool, blood and tissue samples with real-world clinical data. This could help identify unmet need and shift care pathways towards personalised medicines. It would certainly be a huge step forward towards discovering new treatments and a cure, transforming the way research and development is conducted and importantly the speed with which it can occur. We also have plans to implement artificial intelligence (AI) and machine learning (ML) into this biobank, but need to remind ourselves… one ‘byte’ at a time!

Author: Joseph Pipicella is the Head of Operations at Crohn’s Colitis Cure (CCCure).

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BRAIN INJURY YARNING CIRCLES

AN INNOVATIVE COMMUNITY APPROACH TO SUPPORTING ABORIGINAL PEOPLE WITH ACQUIRED BRAIN INJURY.

Acquired brain injury (ABI) can have long-term effects that significantly impact everyday functioning and relationships, including communication, memory, mobility, behaviour and personality changes. Access to services following ABI remains challenging for Aboriginal people.

Over 70% of Aboriginal people in Western Australia (WA) with ABI come from regional, rural and remote areas, and often fly great distances off-Country to Perth for acute

care, rehabilitation and sometimes long-term accommodation. Ongoing rehabilitation after hospital discharge is currently impossible for the majority of people returning to regional areas, as few offer rehabilitation services. Even in metropolitan areas, ongoing support is limited, with a lack of culturally secure services available.

Our previous research with Aboriginal people and their families revealed recommendations for ongoing practical support, further information on brain injury, and culturally secure services, involving more Aboriginal health professionals. In order to address these issues and explore possible community support systems, the Brain Injury Yarning Circles project was undertaken in Perth and a WA rural town in 2021/2022 aiming to improve the social and emotional wellbeing of Aboriginal ABI survivors.

The concept of ‘yarning circle’ was adopted to reflect cultural practices familiar to Aboriginal people and align with Aboriginal conversational styles, cultural sharing and community principles of inclusiveness. The notion of cultural security was central, ensuring that Aboriginal

participants felt culturally ‘safe’ – able to have a sense of belonging and ownership, to feel comfortable in being their own self in order to enhance their wellbeing further, and to connect culturally and personally to their community.

SUPPORT PROVIDED BY THE YARNING CIRCLES

Conducted by skilled local Aboriginal facilitators, the yarning circles provided emotional support, cultural activities and brain injury education in a culturally safe space. Five people with ABI and the mother of a young man with ABI participated in the metropolitan group, and six people with ABI participated in the rural group. Ages ranged from 37-63 years. The Perth group was predominantly male, with members from across WA having mixed causes of ABI and significant physical, cognitive and communication impairments. Several lived in supported accommodation and attended with carers. The rural group was predominantly female, less culturally diverse, with most members linked closely to the small rural town. The primary cause of ABI was domestic violence, with most reporting mild cognitive impairment rather than physical or communication problems.

SHARING BRAIN INJURY EXPERIENCES

While the groups differed, there was a common desire for somewhere to share brain injury experiences and participate again in cultural and social activities in a space where their cultural needs were met – a place of belonging. The metropolitan group was established in an Aboriginal community centre, where cultural activities, a food security program, complimentary service supports and an Elders group were already operating. The rural group took place both in a local community hall and outside at on-Country locations.

Activities were not prescribed and followed what the group members wanted. These included painting, music, trips on-Country, self-care sessions, language activities (e.g. learning Noongar language), sharing of stories and information around brain injury and discovering their ‘new’ identity, always involving lunch and socialising around food.

OUTCOMES OF YARNING CIRCLES

Participant and facilitator responses to the yarning circles were overwhelmingly positive, despite COVID-19 influencing the establishment of the groups and attendance intermittently. Participant quotes included the following:

“There is somebody that you can yarn with about that stuff, cause not a whole lot of people really understand the impact of someone having an acquired brain injury and how it changes their life” (mother of son with ABI – metro)

“With other Aboriginal people here, expectations and image doesn’t matter – it’s great you know you’re accepted for who you are as a person. That’s really valuable” (male with ABI – metro)

SUPPORTING ABORIGINAL LED SUPPORTS

The importance of cultural support and engagement with other Aboriginal people in an Aboriginal-led environment was an overwhelming theme in participant and facilitator interviews conducted to evaluate the groups. The location of the yarning circles in already existing gathering places for Aboriginal people was also crucial1. Participants fully participated in activities that were empowering, educational and most of all fun! In a health service environment still coming to terms with what culturally secure services look like, the Brain Injury Yarning Circles model offers an innovative way forward. Lessons learned include ways to operationalise ‘cultural security’ and offer a service which is both valued and developed by Aboriginal people with brain injury, their carers and community.

The funding for this research was provided by the Neurotrauma Research Program WA, hosted by the Perron Institute, and was funded by the Western Australian Department of Health

1 The metropolitan yarning circle centre – the Champion Centre – “is a gathering place for Aboriginal people. It offers an inclusive neutral environment to promote healing of many groups with the local area, share knowledge and connect with the community.” (City of Armadale website)

Authors: Professor Beth Armstrong is Foundation Chair in Speech Pathology at Edith Cowan University in Perth. She leads a multidisciplinary team of Aboriginal and nonAboriginal researchers focused on improving service delivery and quality of life for Aboriginal people after brain injury.

Kerri Colegate is a Noongar woman from the Balladong/Yuat clans. She is a a Research Project Coordinator at Edith Cowan University She established and was the facilitator of the metropolitan-based Yarning Circle described in this article.

Lenny Papertalk is a Yamatji woman who has completed a Bachelor of Applied Science and Diploma of Indigenous Community Management & Development, a Diploma of Management and her Master of Social Work. She has worked in many community-facing as well as research roles at the WA Centre for Rural Health (University of Western Australia). She established and was the facilitator of the rural-based Yarning Circle.

go home you feel refreshed again… so you’re ready for the next..whatever you gotta do” (female with ABI -rural)

Metropolitan facilitator Kerri Colegate and members of the Yarning Circle.

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INDUSTRY, INNOVATION AND A LONG-GAME APPROACH TO SOLVING THE CHRONIC PAIN PROBLEM: A PAIN REVOLUTION

Chronic pain is, on any metric, one of the most burdensome health conditions we face: it directly impacts about 1 in 5 people; it is responsible for more disability-adjusted life years than any other condition; its economic impact is comparable to cancer and diabetes combined; it is the most common reason for early retirement and those retirees leave with less than 20% of the average retirement savings; chronic pain is a significant risk factor for diabetes, cardiovascular disease, stroke, depression and suicide.

Evidence-based clinical guidelines around the world agree that the best treatments we have for chronic pain are education and active and psychological self-management strategies. These treatments are called ‘high value’ or best

care and contrast with ‘low value care’ options, which are not supported by evidence nor recommended in clinical guidelines. Low value options are often expensive, risky and, on average, ineffective. Remarkably however, since guidelines emerged in the early 2000’s advocating for education and self-management strategies as best care, and against low value options such as injections, surgeries and medication, the relative likelihood of receiving best care has diminished.

This remarkable situation is complex, but University of South Australia (UniSA) researchers have identified two key contributors: (i) most health professionals have a poor understanding of the biology of chronic pain, do not see value in delivering best care and/or have very low confidence and skills to deliver it, and (ii) consumers do

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not want best care because it makes no sense to them. They prefer and expect the low value care options, such as medications, injections, and surgery.

BRINGING TOGETHER ALL STAKEHOLDERS

Pain Revolution, a non-profit movement that brings together pain researchers, clinicians, consumers, government, and industry, aims directly at these two contributors.

Pain Revolution’s vision is that all Australians have the skills, knowledge, and access to local resources to prevent and overcome persistent pain and pursues this vision through two core programmes: the Local Pain Educator (LPE)/Local Pain Collectives programme and the Rural Outreach Tour.

Through a successful and building relationship with AIA Australia, partnership with over 50 community and health organisations across Australia, and the fundraising efforts of 150 clinicians, researchers, recovered consumers and carers, Pain Revolution has trained 60 rurally or regionally based health professionals in pain science, pain education and management, and established 30 Local Pain Collectives.

LPEs are physiotherapists, GPs, OTs, social workers, nurses, exercise physiologists and pain specialists. They each undertake a two-year programme that includes a Professional Certificate in Pain Science and Education, mentoring and support to establish a network of health professionals (‘Local Pain Collective’) in their region, and resources and skills to train their colleagues in modern pain science, education and care.

LOCAL PAIN COLLECTIVES DELIVER OUTREACH SERVICES

Together, these Local Pain Collectives deliver outreach events within their general community. These initiatives aim to embed the necessary knowledge, skills and health professional networks to deliver best care locally.

The approach differs from other strategies to tackle the rural chronic pain and opioid problems, which invariably involve a fly out – fly in model, in which patients visit citybased pain specialists, or a fly in fly out model, in which city-based specialists run monthly clinics in rural areas or are made available to local health professionals for on-line case discussion.

Pain Revolution’s capacity-building programs are playing the long game. They also prepare local health professionals in advance of the Rural Outreach Tour. Up to 50 cyclists and 20 pain education specialists bring a touring ‘Brain Bus’ with interactive experiences related to pain and its management, deliver public engagement events, health professional workshops and as many public-facing media and industry engagements as the team can muster.

The team stays in local hotels and eats in local restaurants, delivering an economic as well as a health and wellbeing injection. The Rural Outreach Tour delivers a simple message and call to action to the wider community: “there are better ways to prevent and manage chronic pain and there are health professionals in your community who can coach you through it”. Strategies aim to nudge consumers towards new ways to understand and manage their chronic pain, to ask new questions of their health professional, to expect best care.

Pain Revolution’s knowledge and skills training, delivery, support and evaluation strategies, interface with the extensive pain research programs undertaken in UniSA’s IIMPACT in Health. IIMPACT’s programme of pain research traverses an innovation to implementation pipeline, with projects focussed on pain education, fibromyalgia, endometriosis and pelvic pain, child and adolescent pain, osteoarthritis and spinal pain.

FAST TRACKING DISCOVERIES TO RURAL AND REGIONAL COMMUNITIES

The LPE programme fast tracks research discoveries straight to rural and regional health professionals; the LPE network and an extensive consumer advisory group directly guide research priorities and strategy.

Pain Revolution’s work has been recognised with prizes here and abroad, for example Engagement Australia’s Excellence in Community Engagement and the American Pain Society’s Prize for Public Service, and is being replicated overseas (e.g. the UK’s Flippin’ Pain campaign).

The impacts of its work include elevated knowledge and skills in pain education and management for rural and regional health professionals, improved care for people with chronic pain, more efficient and effective referral networks and collaborative case management, stronger local health professional networks, increased job satisfaction and retention of health professionals in rural and regional areas.

Through AIA Australia’s industry-leading Impact program, Pain Revolution aims to drive its programmes to greater impact.

Professor

Considering that chronic pain exerts personal, social and economic burdens comparable to those of poor mental health, but receives less than 1% of the government and philanthropic support for care delivery, industry stakeholders’ support will be essential if we are to improve outcomes for the 1 in 5 Australians challenged by chronic pain.

Author:

Lorimer Moseley AO, Bradley Distinguished Professor at UniSA and founder of the non-profit Pain Revolution.

Professor Lorimer Moseley AO

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OPEN

RESEARCH A CASE STUDY

Health Open Research is an open research publishing platform launched in 2022 with the UK’s Association of Medical Research Charities (AMRC).

Health Open Research, which uses F1000’s open research publishing model (including open access, transparent peer review and FAIR data), aims to maximize the potential and real-world impact of health and medical research. Here we tell the story of how research funded by one of the AMRC’s member charities led to benefits for patients, their families and care givers, and continues to influence policy and patient care.

Two research studies funded by Marie Curie, the UK’s leading end-of-life care charity and charitable funder of palliative and end-of-life care research, helped to influence health care policy in the UK. The open, transparent publication of this research on Health Open Research means these findings are freely and quickly available to everyone and can continue to shape future research as well as policy and political thinking about end-of-life and palliative care.

IMPACT OF COVID-19 ON HOSPICES AND MARIE CURIE’S COMPROMISED CONNECTIONS CAMPAIGN

Dr John MacArtney, Marie Curie Associate Professor at the University of Warwick Medical School’s Unit of Academic Primary Care, led research into the impact of the Covid-19 pandemic on hospice care in England’s West Midlands region. This was the first study in the UK to provide an in-depth exploration of hospice services during the pandemic. Lynn Tatnell, Patient and Patient and Public Involvement (PPI) contributor to the research, describes the impact of Covid on hospice care, “I was very moved at the way Covid affected the hospices […] Death became a lonely affair without hands to hold nor comfort in the final minutes.

“Dr MacArtney’s findings fed into Marie Curie’s Compromised Connections report, which focused on the lived experience and needs of end-of-life patients, their families, and caregivers, and offered recommendations to inform government strategies and future planning for hospice care a part of the wider health and care system. For Dr MacArtney, open publishing was critical in optimising impact:

This review was developed so that such policy and practice recommendations could be contextualised with the rapidly evolving policy landscape. We wanted the research to reach as wide an audience as possible, including nonacademic clinicians and the public – as quickly as possible. As the publishing Platform is fully open, I knew AMRC Open Research [now Health Open Research] provided a good way to achieve that.”

EXAMINING THE BENEFITS OF OPEN RESEARCH

Publishing research findings openly ensures that they remain freely and rapidly available for everyone to access

and can continue to feed into policy and practice, maximising the real-world impact of the research. In March, Hospice UK’s All Party Parliamentary Group of-life care during the pandemic referenced Dr MacArtney’s research and

continue to feature learnings from this work and link to the findings published on Health Open Research. Integrated Care Systems and England’s Health and Care Act

Another research project – the Better End of Life Programme (a three-year collaborative project between Marie Curie, King’s College London’s Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge) – analysed the inclusion of palliative and end-of-life care within England’s strategy for joined up health and care services, known as Integrated Care Systems (ICSs). This research fed into parliamentary briefings providing “a once in a generation opportunity” for charities and campaigners to ensure a duty in law for ICSs to provide end-of-life and palliative care, an aim which was achieved through inclusion of specific references in the Health and Care Act 2022.

WHAT IS THE FUTURE FOR THIS RESEARCH?

The publication of this influential research on Health Open Research means that all findings, including the underlying research data, and peer reviewers’ comments and recommendations are openly and permanently available so future research can build on it. As Rachel Chambers, the Research and Projects Coordination Assistant at the Cicely Saunders Institute, King’s College London, commented:

We knew that subsequent open publication of the research would provide rigorous and open peer review and full transparency and availability of all data and findings. Importantly, this information can continue to be shared with policy makers who may be developing their own ICS strategies.

The King’s College team will present the research at the 18th World Congress of the European Association for Palliative Care, the open research publication once again enabling the sharing of research openly and transparently with international colleagues.

F1000 Research encourages such collaboration with colleagues and researchers in Australia. Members of Research Australia will know the importance of evidencebased policy making for health care systems and the need to build on research to progress health and medical care. Open research publishing supports researchers in progressing science that benefits societies. To find out more go to https://healthopenresearch.org/

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SHORT, SHARP HIGHLY PRACTICAL BULLETINS IMPROVE MEDICATION SAFETY

Electronic medication systems (EMS) can improve medication safety in hospitals but are not always completely fit for purpose.

Sometimes clinical staff can’t find the drug they are looking for in a drop-down menu or the options for safe IV use aren’t clear. In order to optimise performance of an EMS, and make care safer for patients, modifications to the EMS can be required. The new Health Innovation Series developed by Macquarie University provides expert tips to alert users to the limitations of EMS and identifies how these can be addressed with future design enhancements. They also educate users on the optimal use of EMS to avoid potential safety risks.

THE HEALTH INNOVATION SERIES

Drawing on a five-year program of research, a team led by Professor Johanna Westbrook and Dr Magda Raban from the Australian Institute of Health Innovation at Macquarie University, launched the Health Innovation Series. Each bulletin contains EMS optimisation tips that can be actioned by EMS managers and system vendors, as well as user tips for health professionals including nurses, doctors and pharmacists. The first nine issues released so far have been extremely well received with more than 3400 original downloads and feedback from the health system that they are highly valued.

Preventing dangerous intraspinal injections is just one of the topics addressed in the Health Innovation Series to improve the safety of electronic medication systems.

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PREVENTING SERIOUS INJURY

One the most downloaded bulletin to date is on the topic of ‘ Preventing dangerous intraspinal injections .’ While intraspinal injections are a specialised method of administration, errors relating to this route may result in severe patient harm.

For example, intraspinal injection of tranexamic acid results in severe patient harm with a mortality rate of 50%. The Institute for Safe Medication Practices has also recently highlighted the issue of accidental tranexamic acid administration via intraspinal injection. The system optimisation tip by the Health Innovation Series was twofold:

• Remove any intraspinal route options (e.g., intrathecal, epidural etc) for tranexamic acid from the EMS.

• Remove all route options apart from IV continuous infusion and IV intermittent infusion for vinca alkaloids.

ISSUES WITH MEDICINE LOCATIONS CONTRIBUTE TO FRUSTRATION

Another popular bulletin dealt with the issue of clinical staff not being able to locate a medication name in the EMS. This can lead to frustration, delays, and errors in prescribing. Recognising there are several reasons why a medication might be hard to find—including the use of common brand names versus generic names, and the international move to harmonise ingredient names—

several practical system optimisation tips are provided, including the recommendation to include dual labelling in drop-down menus e.g., argipressin (vasopressin). A ‘signpost’ entry could also be used, such as “vasopressin – see argipressin”, with a rule preventing prescription of the ‘signpost’ entry. Lastly, alternate names or spelling can be added to the comments or instructions field of the order sentence or template, so these are visible to nursing and other staff.

Another bulletin addresses the complications that can arise when using an EMS in the paediatric context – ‘is the rounding rule in your dose calculator causing dose errors in children?’ This issue was also identified by a national investigation in the United Kingdom into weight-based medication errors in children.

Professor Johanna Westbrook

BENEFITS OF DOSE CALCULATORS

Dose calculators are helpful tools, particularly in the paediatric setting where the majority of medication doses are weight dependent. However, calculators can have default rounding rules, which can be useful but can also lead to errors.

A rounding rule in a dose calculator can assist with determining the total dose and rounding a dose to ensure ease of administration, e.g., rounding a paracetamol dose from 495mg to 500mg to be consistent with a 500mg tablet. While some rounding rules may be suitable when prescribing for adults and older children, these rounding rules may cause unsafe doses for young children of lower weight. For example, if the rounding rule to the “nearest whole number” is used as a default rule for ondansetron, there is the potential for underdosing or overdosing in young children.

The bulletin goes into more detail on the other type of errors that may occur and offers system optimisation tips that consider dosage impacts for lower weight children. The Health Innovation Series demonstrates how research can be communicated in a timely and practical format for health professionals working with EMS, and for system managers and vendors to drive improvements in systems design and use.

Authors: Professor Johanna Westbrook, Director, Centre for Health Systems and Safety Research, at the Australian Institute of Health Innovation, Macquarie University Dr Magda Raban, Senior Research Fellow

Dr Magda Raban, Senior Research Fellow

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A POWERFUL NEW TOOL FOR CHRONIC DISEASES RESEARCHERS

Dr Kerrin Bleicher (centre) with the 45 and Up Study team at the Sax Institute.

Together, chronic diseases make up the largest share of Australia’s disease burden and are the leading cause of illness, disability and death.

Research into the causes of chronic diseases is key to finding better ways to treat, manage and prevent them –and yet obtaining robust data to undertake research can be challenging. We need to develop innovative ways to address barriers to research and support and expand critical work in this area.

The Sax Institute has been working for over two years to develop the Chronic Conditions Umbrella Program Linkage (CUPL), a big data project which brings together the 45 and Up Study – one of the world’s largest longitudinal surveys into health and ageing – with ten other key health data sets and readies them for researchers.

This important initiative is a major boost for chronic condition research, enabling projects to get up and running far more quickly than has been the case until now.

BRINGING TOGETHER IMPORTANT HEALTH DATA

Since 2005, more than a quarter of a million Australians aged 45 and over have been providing the Sax Institute’s 45 and Up Study with detailed information on their health, wellbeing, attitudes and behaviour, providing unique insights for research projects across the entire spectrum of chronic conditions, including heart disease, diabetes, cancer, dementia, respiratory disease, mental health conditions, chronic musculoskeletal conditions and more.

A key advantage of using the Study is that all participants consented to linkage of their surveys with other health data sets. CUPL radically simplifies this data linkage process, while at the same time broadening its potential scope. It allows researchers to link data from the 45 and Up Study with other health datasets with just a single approval process to manage them all.

SLASHING RESEARCH SET UP TIMES

It slashes research set-up times by up to 80%, allowing projects with potential to improve patient care to get underway quickly and efficiently, boosting the quality and quantity of chronic conditions research across Australia.

Available datasets in the CUPL package include Medicare data, prescription data, hospital and emergency department admissions, NSW Cancer Registry, mental health care, COVID cases, cause of death data and more. These datasets are updated regularly, giving chronic conditions researchers access to near-current information.

Under CUPL, research projects still face rigorous scrutiny, but approval is streamlined into a simple three-step process: the researcher writes a proposal; it is considered by a scientific review panel for feasibility and alignment to CUPL’s purpose; and the Sax Institute submits the final proposal to the NSW Government’s Population Health Services Research Ethics Committee (PHSREC).

As soon as a project is approved by PHSREC, research projects get fast-tracked access to the current, relevant data. A good proposal can get through this process in as little as two months – with much of the normal administrative burden taken care of thanks to CUPL’s pre-arranged agreements with database custodians. Data is provided to researchers through the Sax Institute’s Secure Unified Research Environment (SURE) to ensure strict security and confidentiality are maintained throughout the process.

LINKED DATA IS A POWERFUL TOOL FOR RESEARCHERS

Linked data is a particularly powerful tool for research into complex, chronic health conditions. It allows researchers to investigate a wide range of factors associated with chronic conditions and capture variation in outcomes.

It can identify trends and patterns in disease prevalence and changes in incidence across population groups; tease out important associations and interactions between lifestyle factors; and evaluate the effectiveness of interventions and equity of care and outcomes.

CUPL represents a significant step forward in the ability of researchers to conduct this kind of work. The 45 and Up Study provides a huge amount of useful information on the experiences of a quarter of a million Australians, and how they change over time.

By connecting this trove of information with major administrative datasets more quickly and effectively, CUPL is facilitating the next generation of research into what causes chronic diseases, how outcomes vary between rural and remote areas and different socioeconomic groups, and much more.

This will flow through to new strategies for prevention and disease management that will benefit all Australians.

Dr Kerrin Bleicher leads the 45 and Up Study and its teams as Director, Research Assets at the Sax Institute. If you’re a researcher and would like to know more about opportunities to use CUPL, please contact Kerrin or the 45 and Up Coordinating Centre team at 45andUp. research@saxinstitute.org.au

Chronic conditions pose a significant challenge to our wellbeing and to our health system. Nearly half of Australians have at least one chronic condition and, according to the Australian Bureau of Statistics, one in five have two or more.

Author: Dr Kerrin Bleicher, Director, Research Assets at the Sax Institute.

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IMPROVING THE HEALTH AND WELLBEING OF PEOPLE WITH INTELLECTUAL DISABILITY

People with intellectual disabilities often have complex health needs and are high health service users.

David Harrison (Pro Vice Chancellor, Communications and Engagement, University of Notre Dame Australia), Dr Rachel Skoss, Simon Millman MLA (WA Parliamentary Secretary to the Minister for Health) at the launch of the Health Guide, October 2022.

Our landmark study, funded by a WA Department of Health Translation Research grant, considered how disability organisations support the for health and wellbeing of their clients, and the current health literacy status of the workforce providing those supports.

SUPPORT NEEDED TO ACCESS SERVICES

People living in supported accommodation generally have ‘Supported Independent Living’ (SIL) funding in their National Disability Insurance Scheme (NDIS) plan. While the organisations providing this accommodation provide support to access health services, it is important to note that the SIL funding does not cover community access or transport, and additional funding is required within the NDIS plans to cover these.

In a case study of a large organisation that quantified health service utilisation across 18 months, the estimated average cost of support by the organisation per service event was $78.50 (inclusive of staffing and transport).

However, many of the people living in these settings do not have funding specific to the supports required to access health services, leaving the organisation in our case study to find up to an estimated $3,825 per week to provide that support to 160 people. Our research clearly identified the need to provide adequate funding, so NDIS participants have sufficient support to access health care, including preventative health care.

IMPROVING CARE PLANS FOR PEOPLE WITH DISABILITY

Disability organisations develop care plans to support the health of their clients. While management of chronic health conditions are documented within these plans, many do not identify opportunities for preventative care such as having an annual health check or population-based cancer screening.

Similarly, plans could also include goals for improving health via lifestyle factors changes, such as exercising more or a better diet. Evidence highlighted examples where attempts to include these aspects of holistic health care in NDIS plans were not successful.

This suggests that clear guidance needs to be developed and communicated regarding how health and wellbeing can be supported via NDIS plans, so that people are accessing the opportunities for preventative care that exist for the broader population.

IMPROVED HEALTH LITERACY OF CARE WORKERS IS KEY

Health literacy of direct care workers is critical to how they support the health of people with intellectual disability. Amongst other key skills, workers may need to support ‘healthy living’, manage chronic health conditions, identify when an individual is in pain or has a change in their health

status, support communication with health professionals (or communicate on the individual’s behalf), and/or effectively communicate about follow-up requirements (e.g., medication changes, referrals) following health service events. Our study confirmed that the worker’s health literacy knowledge and skills directly relate to their confidence to support different aspects of health.

Currently, there is no relevant training for direct care workers regarding health literacy. Within NDIS plans, direct care worker training is only funded for a narrow range of skills as part of a participant’s individual NDIS plan (e.g. mealtime management, subcutaneous injections).

HEALTH LITERACY TRAINING

Our research found that health literacy training needs to be delivered in a way that is cost-effective and can be immediately translated to work practice; for example, a hybrid model of training could combine a ‘train-the-trainer’ approach with short digital learning modules and relevant resources for the direct care workers to use in practice to support the health of people with intellectual disability. While the Commonwealth Department of Health’s Roadmap for Improving the Health of People with Intellectual Disability highlights improving health literacy of caregivers as a strategy to improve health outcomes of people with intellectual disability, there is no state or federal mechanism to fund the development or delivery of general health literacy training.

As a response to the identified need in disability sector, a health literacy resource was developed. The resource aims to improve the knowledge and skills of the direct-care workforce to support the health of people with intellectual disability and facilitate their access to health services including preventative care, management of chronic conditions, and acute care. Since the launch of the guide, organisations have told us that it is making a difference to how their clients are supported with their health.

It is also important to invest in the health literacy of people with intellectual disability. While there is opportunity to consider ‘health literacy’ within the capacity building aspect of NDIS plans, related goals are rarely included in plans. Critical health literacy skills such as goal setting for healthy living and supported decision-making are in scope for this aspect of NDIS funding. Health literate direct care workers are well placed to help build the health literacy skills in the person they support.

Author: Dr Rachel Skoss is a Senior Research Fellow at the Institute for Health Research, University of Notre Dame Australia. Rachel brings lived experience as a carer of a young person with ID, and has held carer representative, advisory, and governance roles in the health, mental health, and disability sectors.

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TRANSFORMING HEALTH SYSTEMS THROUGH HIGH-QUALITY, PERSON-CENTRED RESEARCH

Contemporary health systems face considerable challenges threatening access to, and the quality of health care delivery.

In 2022, the UNSW Faculty of Medicine and Health launched the Health Systems Research Theme, harnessing that expertise to facilitate large-scale, multidisciplinary research responding to significant health system challenges, improving health system performance, and ensuring equitable access and outcomes for all.

The ever-increasing demand for health services, burgeoning health care costs and significant resource constraints result in disparities in health care delivery and outcomes that continue to grow for the most vulnerable people in our community.

The COVID-19 pandemic has also put into sharp focus the need for resilient health systems, with the capacity to respond quickly and innovatively to tackle complex systems challenges.

UNSW Sydney has a long history in leading impactful health systems research.

Health systems research plays a pivotal role in responding to these challenges.

The goal of the Health Systems Research (HSR) Theme at UNSW is to develop and implement high-quality, person-centred health systems research that will improve individual and population health and well-being for Australians and the global community.

We partner with community, policy makers and clinicians to identify and co-design innovative responses to the most pressing and contemporary health systems challenges and critically analyse and evaluate these responses. Our research spans all health care sectors (from primary to

tertiary care), public health and multi-sectorial approaches outside of health.

The HSR Theme brings together the critical mass of internationally recognised and emerging health systems research leaders at UNSW, engaged in interventional and observational research that improves health system performance and health outcomes. The members are healthcare professionals and scientists who bring expertise from disciplines including health services leadership and management, big data analytics, epidemiology, digital health, implementation science and health economics. Matching the expertise of the UNSW

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HSR community with key issues facing policymakers, funders, and health care providers, we have identified and prioritised three flagship research programs: Community and Primary Health Care; Integrated Care; and Evidence Development for Policy and Practice.

Here, we showcase impact stories demonstrating UNSW health systems research in action.

Authors: Sallie Pearson (Theme Lead), Lisa Keay, Natalie Taylor, Kenneth Hillman, Belinda Parmenter, Benjamin Bavinton, Henry Brodaty, Raghu Lingam, David Peiris, Georgina Chambers, Jenny Gieng.

THEORY-BASED IMPLEMENTATION IMPROVES PROCESSES OF CARE: A CASE STUDY OF LYNCH SYNDROME IN COLORECTAL CANCER

Led by the Implementation to Impact Research Hub, School of Population Health

Introducing and maintaining practice improvements in complex health systems requires authentic partnerships between researchers and clinicians. We used a cluster-randomised implementation trial in seven Australian hospitals (>4,500 patients diagnosed with colorectal cancer) to assess the effectiveness of theory-based versus non-theorybased implementation strategies in improving the rates of risk-appropriate Lynch Syndrome tumour testing and referral to genetic services. We trained

a health professional at each site in evidence-based implementation who formed stakeholder teams, identified barriers, targeted behaviours for change and developed tailored, site-specific strategies. We found rates of tumour testing and referral to genetic services were 30% higher in the sites using theorybased strategies. The TRANSLATE (TRAining in evideNce-baSed ImpLementATion for hEalth) program has potential for scale-up across disease areas and clinical settings. It is currently being trialled in 18 NSW hospitals. The project was funded by Cancer Institute NSW and Cancer Australia.

COLLABORATIVE CARE MODELS IMPROVE ACCESS TO EYE CARE SERVICES AND REDUCE HEALTH CARE COSTS

Led by the School of Optometry and Vision Science and The George Institute for Global Health

Approximately 90% of vision impairment and blindness can be prevented with timely access to treatment. We assessed a new model of care for glaucoma and diabetic retinopathy in Western Sydney Local Health District. The model shared care for low-risk patients between local community optometrists and a public hospital eye clinic involving virtual review

by ophthalmologists. We compared this model to a traditional hospital-based approach in approximately 500 patients with glaucoma and 260 with diabetic retinopathy. We found the collaborative care model dramatically reduced times for assessment (>50% of patients did not require hospital appointments) and significantly reduced health system costs. The project was funded by the NSW Ministry of Health, Agency for Clinical Innovation and an Australian Government Research Training Program Scholarship

MEDICAL EMERGENCY TEAMS REDUCE MORTALITY AND SERIOUS COMPLICATIONS IN HOSPITALISED PATIENTS

Led by the Simpson Centre for Health Services Research

Many seriously ill hospital inpatients are recognised too late, resulting in avoidable cardiac arrests and mortality. We pioneered the Medical Emergency Team (MET) system, recognising and responding to seriously ill inpatients early in their deterioration. Our multi-centre cluster-randomised controlled trial in 23 hospitals demonstrated MET effectiveness and supported its introduction in most Australian hospitals; MET is now

compulsory in NSW hospitals. We evaluated the MET roll-out in NSW; over an eight-year period we observed a 52% decrease in the incidence of in-hospital cardiac arrest and 55% decrease in cardiac arrest-related mortality. The MET system is now routine practice in hospitals around the world. Our research has resulted in over 60 peer reviewed publications, including a widely cited paper in the Lancet. The research was funded by the National Health and Medical Research Council and Medical Research Future Fund.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

HARNESSING TRANSDISCIPLINARITY TO IMPLEMENT GENOMICS AT SCALE.

Genomic testing

Genomic testing uses the information from an individual’s genetic code (DNA) as part of their care to be used towards diagnosis, tailored treatments, disease risk analysis, reproductive planning, improving the understanding of genetic disease, and ultimately leading to precision medicine.

There is a global effort to mainstream genomics (routine use of genomic testing by health professionals outside of clinical genetics services) to increase equity of access and provide high quality personalised care. Included in this global effort has been the study of how to best implement genomic mainstreaming using implementation science – a discipline concerned with studying the best methods to translate research findings into practice.

Internationally many teams have investigated implementation of genomics for the last 5-10 years. While these studies have led to an extensive understanding of the complex interrelated barriers and facilitators to genomic mainstreaming, implementation approaches have failed to have impact on the adoption of the technology by nongenetic health professionals at scale.

As a result, despite extensive investment in genomic research and Medicare funded tests in Australia, families are still unable to access genomic testing from their nongenetic healthcare professionals. Genomic mainstreaming is now at an impasse: ‘how can we implement, scale, and sustain genomic testing as routine practice within nongenetic healthcare settings to increase quality of care and equity of access?’

THE CHALLENGE OF MAINSTREAMING GENOMIC TESTING

A team led by the TD School’s Implementation Lab at University of Technology Sydney are working to disrupt the wicked challenge of genomic mainstreaming at scale and act as a pioneering catalyst for change by offering a much-needed alternative to gradual incremental research approaches.

To make change happen within a complex adaptive system like healthcare in the current climate, it is best to intervene within identified leverage points by probing and observing. This can take the shape of real-world experiments that combine building solutions with measuring impact and continuous improvement via rapid cycles that harness true transdisciplinarity. This means going beyond the traditional multidisciplinary and interdisciplinary approaches we have tried in the past.

COMPLEX CHALLENGES AND BOUNDARIES

True transdisciplinarity begins with acceptance that the systems and most challenges we are facing (such as the translation of research into practice sustainably at scale) are complex in nature. These complex challenges are not confined and have permeable boundaries and are embedded within multiple social systems that undergo coevolution and adapt constantly to the larger ecosystem. These complex systems are made up of diverse semiautonomous agents whose actions are interconnected leading to continuous emergent, novel behaviour resulting in inherent non-linearity and self-organisation. These features of complex challenges within complex adaptive systems make them innately unpredictable, and there will always be unresolvable tensions and paradoxes.

Yet, despite the unpredictability, complex adaptive systems also have inherent patterning because agents within the system base actions on internalised rules and feedback loops. This makes it possible to study phenomena within a complex system and make valuable statements about general patterns of behaviour to inform attempts at change, improvement, and innovation. Therefore, when performing implementation science research in a complex adaptive system like healthcare it is imperative to take a ‘complexity’ view of understanding change and designing for adoption, scale, and sustainability.

Solving complex challenges cannot be approached by one discipline alone, because they are hyper-connected

technologies are advancing at a rapid rate with established evidence for benefit across many health conditions.

and require the input of many disciplines and spheres of individuals and groups outside of research.

Transdisciplinary (TD) research is a process and a knowledge production mode that has emerged in response to understanding and solving complex challenges across sectors and has many definitions, however at the core of TD research are some key features: (1) an integration of many disciplines in a way that transcends individual disciplines, (2) the research involves participation by actors outside of the research sphere and values their expertise as indispensable for knowledge production and problem solving, (3) the central focus is on complexity, holism and systems lens, (4) the research is action-oriented, future-focused, and impact-driven. TD research differs from multidisciplinary and interdisciplinary research as illustrated in Figure 1.

Multidisciplinarity is the coordinated input from two or more disciplines to solve a problem, but disciplines stay within their boundaries. Interdisciplinarity is the emergence of a new field or discipline in response to a gap or need via a coordinated and coherent synthesis of different disciplines.

To attend to the complex barriers of genomic mainstreaming, the transdisciplinary team at University of Technology Sydney

are working at edge of over 10 disciplines at each phase of research for a powerful approach intended to accelerate impact in real-time during the project (Figure 1).

Data collection and analysis methods are deployed using approaches from diverse disciplines including implementation science, complexity science, humancentered design, artificial intelligence, interaction design, health economics , ethics , social impact, and creative approaches, via extensive co-design with clinical practice (genetic counselling, clinical genetics, and other specialities) and consumers

The end products will be pragmatic, action-oriented, and creative solutions that emerge directly from the TD process. To realise the impact of genomics for families, there is a need for a creative transdisciplinary approach to land possibilities into reality.

Figure 1

Author: Hossai Gul, Lecturer, Head of Implementation Lab, TD School, University of Technology Sydney

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

AUSTRALIAN GENOMICS – DRIVING RESEARCH INNOVATIONS INTO CLINICAL PRACTICE.

is undergoing a

On the other hand, achieving the whole-ofsystem change necessary to realise the benefits of these innovations is a major ongoing challenge for governments and service providers.

NOWHERE IS THIS MORE EVIDENT THAN IN THE FIELD OF GENOMIC MEDICINE.

Over the past 20 years, genetic sequencing has moved from the study of individual genes to panels of hundreds of genes, to sequencing a person’s entire genome of 20,000 genes in just a few days. And with each new phase has come decreasing cost, faster sequencing capability and rising demand.

Once a research-driven tool, the use of genomic testing in clinical practice is expanding rapidly. In its top 10

predictions for 2030, the National Human Genome Research Institute in the United States predicted that every person’s complete genome will be available in a user-friendly form on their smart phone. It is estimated that by 2025, more than 60 million human genomes will have been sequenced; by 2030 this number will exceed 100 million.

We now talk about whole-of-life genomics from reproductive genetic carrier screening, through to newborn screening, early rapid diagnosis of rare diseases, risk prediction and early identification of adult-onset diseases such as cancer, and targeted therapeutics based on genotype. Genomics is a critical building block of precision medicine – where the ultimate goal is to prevent disease before it occurs, and to remove trial and error from patient management.

Bridging the gap between genomic research and clinical practice has been a fundamental role of Australian Genomics, which began in 2016 as an NHMRC-funded project, and has grown into a national collaboration of more than 100 partner institutions including clinical and genetic laboratory services in every state and territory, research institutes and universities, patient organisations and professional bodies, and more than 450 investigators and collaborators.

Australian Genomics is rooted in health services research and implementation science and is focused on building the research evidence to inform policy and practical strategies

Healthcare

seismic shift in many countries. On the one hand, the outlook is bright, with many discoveries and technologies that will transform the way we approach our health.

Professor Kathryn North

for integrating genomics into mainstream healthcare. It is a complex process navigating commonwealth, state and territory governments with different systems, practices and guidelines. But it is imperative that we adopt a wholeof-system, whole-of-country approach to ensure equity of access to precision medicine.

We have recently published the outcomes of our first five years 1 Through a series of more than 20 prospective national clinical cohort studies in rare diseases, and cancer, Australian Genomics has established national collaborative clinical and research networks to catalyse high quality research and translation, and an inter-related suite of programs across data management, regulation, ethics, policy and workforce infrastructure, implementation science and health economics – all disciplines that will underpin the successful integration of genomics into healthcare. For example, one of our recent projects has been to develop a detailed plan for implementing a national genomic data management system that will federate data from different sources, and “bring the analysis to the data” to ensure that the cumulative evidence is available to inform clinical care. As demand for genomic sequencing escalates, so do the challenges associated with the unprecedented amount of data it generates. Each human genome is equivalent to 1000 copies of War and Peace! To achieve our goal of equity of access across the healthcare system, we need interconnected data systems, policies and processes governing data access and use, adherence to international standards, and a safe and secure digital infrastructure, to name a few.

As part of each clinical cohort study, the investigators supported by Australian Genomics have generated the evidence of clinical utility and cost effectiveness necessary to drive the implementation of genomic testing as an integral component of patient care. For example, the introduction of genomic testing early in the diagnostic workup of childhood syndromes resulted in an increase in diagnostic rate from 11% to 55% (a five-fold increase) and a decrease in cost per diagnosis from AU$26,000 to

AU$6500 (a four-fold decrease)

a Medicare item number to ensure equity of access. The Acute Care Genomics research program provided whole genome sequencing in just three days for over 400 critically ill children in intensive care in every state and territory. This world-first national program provided a diagnosis in 50% of children and changed care in 75% of cases – meaning fewer hospital stays, fewer invasive procedures and in some cases access to life-saving treatments3. The program saved the hospital system $10M per annum and is rapidly being adopted as standard of care around the country.

Another landmark study with the potential to transform the way we approach rare disease is the Australian Reproductive Genetic Carrier Screening project, also known as Mackenzie’s Mission4.

This national study tested almost 10,000 couples to determine if they were carriers of 750 severe, childhoodonset genetic conditions, including conditions where early diagnosis and treatment can improve a child’s health. The study set out to provide evidence for the future introduction of free reproductive genetic carrier screening for every couple who chooses to have it.

It is projects such as these that will transform the way we think about and deliver healthcare throughout the life course – leading to earlier diagnoses, targeted treatments, and person-centred care for a healthier population.

Over the next two years, Australian Genomics will transition to become a Government Agency focused on translating evidence from research in the field of genomic medicine into widespread clinical practice. This work will be underpinned by a national legal and ethical framework, national standards for the collection, storage and use of genomic information, and attention to the national workforce requirements necessary to support this agenda.

Most importantly, with the right support and implementation, it will provide equity of access to lifechanging healthcare for all Australians.

2 Stark et al (2016,2017) Genetics in Medicine

3 The Feasibility of Ultra-rapid Exome Sequencing in Critically Ill Infants and Children with Suspected Monogenic Conditions in the Australian Public Healthcare System, JAMA, 2021

4 The Australian Reproductive Genetic Carrier Screening Project (Mackenzie’s Mission): Design and Implementation, MDPI, 2022

Author: Kathryn North, AC. Director, Murdoch Children’s Research Institute

1 Australian Genomics: Outcomes of a 5-year national program to accelerate the integration of genomics in healthcare, AJHG, 2023

Professor Kathryn North

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL My Twitter : @chriskere